Literature Review
For the project
Identification of Barriers
to the
Early Diagnosis
of
People with Lung Cancer
within
Primary Care
and
Description of Best Practice Solutions
(October, 2009)
i
Research Team & Stakeholders
Named Investigators
Dr Wendy Stevens
(Principal Investigator)
A/Prof John Kolbe
A/Prof Graham Stevens
A/Prof Jeffrey Garrett
Dr Christopher Lewis
Dr George Laking
Dr Denise Aitken
Dr Matire Harwood
Dr John Cameron
Dr Richard Hulme
Mr Gary Thompson
Northern Cancer Network (Northern DHB Support Agency: NDSA) & the
University of Auckland (UoA)
Auckland District Health Board (ADHB) & UoA
ADHB & UoA
Counties Manukau District Health Board (CMDHB)
ADHB
ADHB
Lakes District Health Board (Lakes DHB)
Tamaki Primary Health Organisation (Tamaki PHO)
ProCare Health Ltd (ProCare)
Total Healthcare Otara & East Tamaki PHO
Northern Cancer Network (NDSA)
Associates
Mr John Fraser
Prof Rod McLeod
Prof David Thomas
Dr Rob McNeil
New Zealand Guidelines Group (NZGG)
Dept of General Practice, UoA & North Shore Hospice
Social & Community Health, UoA
Survey Research Unit, School of Population Health, UoA
………………………………….
Governance Board Dr Richard Sullivan (Northern Cancer Network)
Dr Wendy Stevens (Northern Cancer Network)
Ms Maree Pierce (Northern Cancer Network)
Research Co-ordinator Ms Melissa Murray (UoA)
Administrative Assistant Ms Kirsty Hunter (Northern Cancer Network)
Inequalities Team Mr Gary Thompson (Northern Cancer Network)
Dr Matire Harwood (Tamaki PHO)
Ms Sandra Mullineaux (ProCare)
Ms Phyllis Tangitu (Maori Health, Lakes DHB)
Dr Heidi Charlick (Pacific Representative)
Expert Advisory Group Dr Wendy Stevens (Northern Cancer Network & UoA)
A/Prof Jeffrey Garrett (CMDHB)
Dr Christopher Lewis (ADHB)
Dr John Cameron (ProCare)
Dr Matire Harwood (Tamaki PHO)
Dr Richard Hulme (Total Healthcare Otara)
Dr Denise Aitken (Lakes DHB)
Mr Gary Thompson (Northern Cancer Network,)
Mr John Fraser (NZGG)
Mr Mark Vella (Total Healthcare Otara)
Ms Kate Moodabe (ProCare)
Mr Karel Lorier (Consumer Representative)
Ms Lynelle Black (CMDHB)
Planning & Funding Representative (ADHB)
…………………………………
Principal Stakeholders
Northern Cancer Network (Northern DHB Support Agency)
Midland Cancer Network
Auckland District Health Board
Counties Manukau District Health Board
Lakes District Health Board
Waitemata DHB
ProCare Health Ltd
Total Healthcare Otara (and East Tamaki PHO)
Tamaki PHO
Rotorua Area Primary Health Services
Pinnacle,Taupo
Māori Health, Lakes DHB
Māori Leadership Group (Northern Cancer Network)
Northern Region DHBs Māori General Managers Group
New Zealand Guidelines Group
University of Auckland
…………………………………
ii
Contents
Page
Literature Review
Executive Summary …………………………………………………………… 1
Aims and Scope of the Literature Review…………………………………... 3
Methods ………………………………………………………………………… 3
Literature Review Findings Section 1: Study Context ………………………………………………….. 6
1.1 International context and trends
1.2 National context & relevant existing research 1.2.1 Background
1.2.2 Lung Cancer in NZ
1.2.3 Relevant NZ Research
Section 2: Framework for Assessment of Barriers and Best Practice …. 11 2.1 The Clinical Pathway
2.2 Dimensions of Quality and Assessment of Best Practice
Section 3: Barriers to Quality Cancer Care ……………………………... 15 Background
Barriers to Quality Cancer Care Identified in the Literature
3.1 Barriers to the accessible care 3.1.1 Financial barriers
3.1.2 Geographic barriers
3.1.3 Service availability barriers
3.1.4 Information barriers
3.2 Barriers to efficient care
3.3 Barriers to safe and effective care
3.4 Barriers to equitable and patient-centred care
Section 4: Interventions to Reduce Barriers to Quality Cancer Care ….. 31 4.1 Interventions to improve the accessibility of care
4.1.1 Financial assistance
4.1.2 Transport assistance
4.1.3 Provision of services close to the rural community
4.1.4 Improved telecommunications
4.1.5 Improved information
4.1.7 Flexible service delivery
4.2 Interventions to improve the timeliness and efficiency of care 4.2.1 Improved access to diagnostic technology and reporting
4.2.2 Interventions to facilitate good communication within the health
system
4.2.3 Interventions to facilitate good coordination of services
4.3 Interventions to improve the safety and effectiveness of care 4.3.1 National clinical guidelines
4.3.2 Establishment of a lung cancer working group
4.3.3 Clinical decision support tools
4.3.4 Multidisciplinary care
4.4 Interventions to improve equity and the patient-centredness of services 4.4.1 Interventions to deal with system factors
4.4.2 Interventions to deal with provider factors
4.4.3 Interventions to deal with patient factors
4.5 Implementation of Recommended Interventions
iii
Page
Section 5: Examples of Potentially Relevant Interventions ……………… 49 5.1 Interventions to streamline the cancer care pathway
5.1.1 Optimal cancer care pathways and waiting time targets in the UK
5.1.2 Radiology pathway
5.1.3 Direct GP access to CT scans
5.1.4 Standardised referral templates
5.1.5 Rapid access lung cancer clinics 5.1.6 Lung cancer care coordinators or patient navigators
5.2 Information resources 5.2.1 Lung cancer patient information pathways
5.2.2 Internet resources for patients
5.3 Care packages
5.4 Successful interventions for Māori and Pacific peoples
5.5 Pay-for-performance packages
Section 6: Best Practice Standards ……………………………………….. 60 6.1 Best practice standards for the management of lung cancer
6.2 Best practice standards for supportive care
6.3 Best practice standards for health literacy
Section 7: Key Performance Indicators ………………………………….. 64 7.1 Types of key performance indicators
7.2 Examples of KPIs 7.2.1 KPIs for lung cancer used in the UK and Australia
7.2.2 KPIs for NSCLC used in the Netherlands
7.2.3 KPIs for patient-centred care in the Netherlands
7.2.4 UK audit tool for the lung cancer pathway
Abbreviations ……………………………………………………………….. 69
References ……………………………………………………………….. 70
Appendices ……………………………………………………………….. 91 Appendix A: Quality Assessment Framework
Appendix B: Summary of the Main Interventions to Improve Quality Care
Recommended in the Literature Appendix C: Examples of UK Referral Forms
Appendix D: Rapid Access Lung Clinic - Patient Information Leaflet
Appendix E: UK Assessment Proforma
Appendix F: UK Performance Indicators
1
Executive Summary
Improving the clinical journey for people with cancer involves identifying the barriers to
quality cancer care and implementing best practice solutions to minimize these barriers.
Whilst barriers to quality cancer care may pertain to all cancer patients, they tend to be
greatest for those from disadvantaged groups. Disparities in access to quality care between
different ethnic and socioeconomic groups are well described in the literature, and such
inequalities in access are believed to contribute to disparities in cancer outcomes.
Lung cancer produces a substantial burden on those who suffer from it, on their
family/whanau, and on health care services. For people with lung cancer, both early
presentation to health care services and timely transit along the clinical pathway from
presentation to treatment are considered essential for optimal health outcomes. Yet delays in
seeking care, delays to diagnosis, and delays to treatment are commonly reported. The current
project assesses transit along the clinical pathway for people with suspected lung cancer, from
initial presentation to the health care system until diagnosis. The project particularly focuses
on the section of the cancer pathway leading up to the first specialist appointment, especially
on the interface between primary and secondary care. Barriers to optimal care may result from
patient factors, provider factors, primary care factors, secondary care factors, or from a
combination of these. The current project does not deal with barriers operating prior to
presentation or following diagnosis.
The literature review was performed to identify the main barriers to quality cancer care within
the relevant section of the clinical pathway, the recommended solutions to these barriers, and
the evidence-base for the recommended solutions. It is a reference document to provide
context and to inform subsequent phases of the project, including the development of the
clinical audit datasheet, questions for the interviews, focus groups and surveys, and the
innovative services stocktake. The literature review is not intended to be a stand-alone
document. It is part of a workbook which documents all components of the project.
Information on currently available services in NZ, discussion of findings and
recommendations and conclusions are provided elsewhere in the workbook.
The literature review is divided into seven sections. Section One provides a brief description
of the context of the study. Section Two describes the clinical pathway and the dimensions by
which the quality of cancer care can be assessed. Internationally, substantial resources have
been allocated to improve the cancer care pathway. Cancer networks, tumour streams, clinical
guidelines and optimal cancer care pathways (patient management frameworks) have been
developed to improve service integration and consistency in cancer care. Whereas clinical
guidelines guide clinical decision-making regarding individual patient care, optimal care
pathways guide service delivery and the broader clinical pathway. Optimal care pathways
involve the mapping of the clinical pathway, identification of critical intervention points
within the pathway, specification of best practice at these points and specification of optimal
transit times between these points. Considerable research has been undertaken previously in
NZ to map the clinical pathway for lung cancer, with the goal of improving the quality of
cancer care. Relevant findings from such research are incorporated into the current report.
Quality is a multidimensional concept that involves attributes such as accessibility and
timeliness, efficiency, safety and effectiveness, patient-centredness, and equity. The
dimensions of quality provide a framework for assessing both the barriers to quality care and
the best practice solutions to deal with these barriers. Barriers are categorised variably in the
literature. For example, they may be categorised into patient barriers, system/structural
barriers, provider/process barriers, or alternatively they may be categorised according to
2
which dimension of quality is most impaired. To facilitate the assessment of best practice
later in the project, the latter categorisation has been used in the current report.
The barriers to quality care in the relevant section of the cancer pathway are summarised in
Section Three. The main barriers reported in the literature to:
Accessible and timely care: include financial barriers particularly transport and travel
costs, geographic barriers, service availability barriers, and information barriers.
Efficient care: include fragmentation of care, sub-optimal mix of providers, poor
integration of services and providers, and disruption to the continuity of care.
Safe and effective care: include lack of available evidence on best practice, ineffective
communication of the evidence to providers, outdated knowledge of providers, and lack
of multidisciplinary care.
Equitable and patient-centred care: include lack of health system responsiveness, poor
provider communication skills and sub-optimal cultural competence. Patient factors such
as beliefs, preferences and health literacy may also be contributory.
The literature on barriers to quality cancer care is vast. Whilst the evidence for these reported
barriers is of variable quality, numerous studies from many different countries have
repeatedly documented similar barriers. There is substantially less literature on the solutions
to these barriers. Many interventions have been recommended to improve access to quality
cancer care. However such recommendations are rarely supported by a strong evidence-base.
Although some of the recommended interventions have been evaluated qualitatively, very few
have undergone any rigorous outcomes evaluation.
The interventions recommended to improve the quality of cancer care are outlined in Section
Four. Commonly recommended interventions involve:
Providing greater financial and other support to patients and family/whanau including
transport and accommodation assistance, more convenient location of health care services
and more readily accessible support services.
Improving information resources and access to professional interpreters.
Improving the flexibility and cultural acceptability of services through more friendly
health care environments, improved cultural competence training of staff, inclusion of
family/whanau in the cancer pathway, and acceptance of Māori perspectives and
practices.
Improving the co-ordination of services by streamlining referral and management
pathways with reduced numbers of appointments, timely investigations, more effective
communication between providers, and the use of patient navigators.
Improving the consistency of care via regional networks, clinical guidelines, decision
support tools, and multidisciplinary care.
Practical examples of these recommended interventions are presented in Section Five.
Interventions should be assessed using a quality framework to determine if they comply with
best practice standards, and they should be monitored using agreed key performance
indicators. Reported standards for best practice and key performance indicators are presented
in Sections Six and Seven respectively. Most standards for best practice and most
performance indicators relate to secondary (rather than primary) care. However some have
been reported for the relevant section of the pathway, and these can be used to inform the
development of local NZ standards for lung cancer care.
The major barriers to optimal cancer care are well documented, and are known to have a
disproportionate impact on Māori and Pacific people, especially those in rural areas. The
current challenge is to identify and implement best practice solutions to these barriers and to
ensure that the proposed interventions reduce disparities in access to quality cancer care.
Implementation of service change requires willingness and commitment to change at all
levels within the health care system, and cannot be achieved without the involvement of all
stakeholders in the process, including lung cancer patients and their family/whanau.
3
Literature Review
The first phase of the project „Identification of Barriers to the Early Diagnosis and
Management of People with Lung Cancer and Description of Best Practice Solutions’
involved a comprehensive search of the national and international literature to identify the
main barriers to optimal care from initial presentation until diagnosis for people with
suspected lung cancer; recommended best practice solutions to minimise these barriers, and
the evidence-base for these recommendations. The search was performed by the principal
investigator using the methods detailed below.
Aims and Scope of the Literature Review
The main aim of the literature review was to identify recommended best practice service
delivery relating to that section of the lung cancer patient pathway from initial presentation to
health services with symptoms, signs or an incidental finding suggestive of cancer, until the
first specialist appointment (FSA), and the evidence underlying such recommendations. The
section of the pathway immediately following the FSA leading up to diagnosis, although not
the main focus of the study, was also included. However the pathway prior to presentation
and that following diagnosis were not included, as these were beyond the scope of the current
project.
In addition to identifying opportunities for service change, the literature review aimed to
provide context by identifying other research in the field, and to provide a theoretical
framework for the assessment of best practice by identifying dimensions of quality care. It
also sought to inform subsequent phases of the project, including the development of question
domains for the interviews, surveys and focus groups.
As the scope of this literature review was broad, an overview of the relevant literature rather
than a formal systematic literature review was performed. The literature review focussed on
the clinical pathway rather than on the clinical management for people with lung cancer and
therefore it did not cover prevention, screening or treatment.
Methods
Search strategies were developed using search questions and key search terms (Medical
Subject Headings: MeSH headings) for each topic of interest. Topics of particular interest
included access to and utilisation of health services especially cancer services, inequalities in
access to and utilisation of cancer services particularly ethnic and geographic inequalities
within New Zealand, timeliness of lung cancer presentation and diagnosis, recommended best
practice, quality assessment of services, and performance indicators.
Combinations of search terms were used according to the particular research topic and
question. Table 1 lists the main MeSH headings used. Search strategies were limited to the
English language, human and adult.
Databases searched included Medline, PubMed, Embase, Cinahl, PsycInfo, Cochrane Library,
ScienceDirect and CancerLit. Other subject-related sites, relevant governmental sites
(national and international), and professional association sites such as those listed in Table 2
were also used. Internet searching using Google and Yahoo search engines was performed to
locate unpublished and grey literature. Articles were assessed for relevance by reading their
abstracts. Relevant articles were accessed, read and summarised. References in the retrieved
literature were reviewed to identify any further sources of information not previously
identified through database or internet searching. All information was then combined and
condensed under the main topics of interests.
4
Table 1: MeSH headings used in the literature search
MeSH Headings included:
Neoplasms; Lung Neoplasm
Carcinoma, Non-Small-Cell Lung; Carcinoma, Small Cell
New Zealand; Australia; Great Britain; United States; Canada; Europe
Practice guidelines
Health Services
Primary Health Care
„Delivery of Health Care‟
Health Services Accessibility
Waiting Lists
Physician's Practice Patterns
Oncology Service, Hospital; Medical Oncology; Radiation Oncology; Palliative Care
Admitting Department, Hospital
Emergency Service, Hopsital
Health Planning
Quality Assurance, Health Care
„Quality of Health Care‟
Quality Indicators, Health Care
Management Audit
Clinical Audit
Program Evaluation
Questionnaires
Diagnosis; Early Diagnosis
Time Factors
Comorbidity
Ethnic groups
Minority Groups
Minority Health
Population Groups
Socio-economic Factors
Cultural Competency
Physician-Patient Relations
Interdisciplinary Communication
Communication Barriers
Access to Information
Patient Satisfaction
Patient-Centred Care
Patient-Care Team
Family Practice
Primary Nursing Care
Nurse-Patient Relations
Cancer Care Facilities
Rural Health; Urban Health
A variety of MeSH sub-headings and keywords were also used (such as Māori, Inequalities,
Delays, Cancer, Cancer Services etc) either alone or in combination with MeSH headings (for
example: Primary Health Care ‘and’ Cancer Services).
The summarised findings were used to inform subsequent phases of the project. The findings
from the literature search were supplemented by the stocktake of successful and innovative
services performed in a later phase of the project (and reported elsewhere in the workbook).
This involved contact with other researchers in the field, as well as District Health Boards
(DHBs), Cancer Networks, and GP practices to identify any relevant unpublished information
of such services.
5
Table 2: Government and professional websites used in the literature search
Organisation Website Ministry of Health (NZ) www.moh.govt.nz
NZ Health Information Service (NZ) www.nzhis.govt.nz
Statistics New Zealand (NZ) www.stats.govt.nz
World Health Organization www.who.int
The Commonwealth Fund www.commonwealthfund.org
Oncology organisations including the European School
of Oncology
www.cancerworld.org
International Agency for Research on Cancer (IARC) www.iarc.fr
GLOBOCAN 2002 database (Descriptive Epidemiology Group of
IARC)
www-dep.iarc.fr
European Observatory on Health Systems and Policies (Europe) www.euro.who.int
Department of Health (UK) www.dh.gov.uk
Scottish Intercollegiate Guidelines Network (UK) www.sign.ac.uk
The Scottish Government www.scotland.gov.uk
National Institute for Clinical Excellence (UK) www.nice.org.uk
National Guideline Clearinghouse www.guideline.gov
NHS Centre for Reviews and Dissemination, University
of York (UK)
www.york.ac.uk
Cancer Services Collaborative „Improvement Partnership‟ (UK) www.cancerimprovement.nhs.uk
NHS Scotland (UK) www.archive.nhsscotland.com
http://www.nodelays.scot.nhs.uk
Australian Institute of Health and Welfare (Australia) www.aihw.gov.au
National Cancer Control Initiative (Australia) www.ncci.org.au
Victorian Government Health Information (Australia) www.health.vic.gov.au
NSW Department of Health (Australia) www.health.nsw.gov.au
Department of Health Western (Australia) www.health.wa.gov.au
Surveillance, Epidemiology and End Results (USA) www.seer.cancer.gov
National Cancer Institute (USA) www.cancer.gov
Institute of Medicine (USA) www.iom.edu
American Medical Association (USA) www.ama-assn.org
Commission on Cancer (American College of Surgeons, USA) www.facs.org/cancer
Centers for Medicare and Medicaid (USA) www.cms.hhs.gov
National Cancer Institute of Canada (Canada) www.cancer.ca
Canadian Strategy for Cancer Control (Canada) www.cancercontrol.org
Cancer Care Ontario (Canada) www.cancercare.on.ca
TRIP (Turning Research into Practice) Database www.tripdatabase.com
Commonwealth Secretariat www.thecommonwealth.org
International Monetary Fund www.imf.org
The findings from the literature review are presented in the following sections:
Section One provides a brief description of the international and national context of the
study, followed by a listing of recent relevant research performed within NZ.
Section Two describes the lung cancer clinical pathway and summarises the dimensions
of quality to provide a framework for the assessment of best practice.
Section Three presents the main barriers to quality care in the relevant section of the
pathway.
Section Four provides a summary of the interventions recommended in the literature to
reduce or eliminate these barriers and provides information (if available) on the
effectiveness of these interventions.
Section Five provides examples of relevant recommended interventions reported in the
literature. Interventions identified from the national stocktake are reported elsewhere.
Section Six details reported best practice standards relating to the lung cancer pathway.
Section Seven provides some brief information on the key performance indicators
reported in the literature for the relevant section of the lung cancer clinical pathway.
6
Literature Review Findings
Section 1: Study Context
1.1 International context and trends Major health service change has occurred over recent years, both internationally and
nationally. Population ageing and the increasing prevalence of chronic disease have led to
increasingly complex health care needs1 2
which when combined with rising community
expectations, technological advances, and improved information systems have resulted in
rapidly escalating health care costs.1 2
The quest to contain health care costs whilst achieving
optimal health outcomes and patient satisfaction has led to re-orientation of the health system
towards primary care;3 as health care systems based on strong primary health care are
currently considered to be more effective and efficient for the management of chronic disease
than those centred on specialist care.
4 5
Primary care has been defined by the Institute of Medicine (IOM) as “the provision of
integrated, accessible health care services by clinicians who are accountable for addressing a
large majority of personal health care needs, developing a sustained partnership with patients,
and practicing in the context of family and community.”6 The role of the primary care in all
aspects of the cancer journey from primary prevention through screening to diagnosis,
treatment and ongoing care is being increasingly recognised.7
Internationally substantial resources have been allocated to improve cancer services. For
example, in the UK1 and Australia,
8 cancer networks, tumour streams, clinical guidelines and
optimal cancer care pathways (including the „Map of Medicine‟ and „Patient Management
Frameworks‟) have been developed to improve service integration and consistency in cancer
care. Programs implemented in the UK to improve cancer services include:
The UK Cancer Services Collaborative Improvement Partnership (2000)9 which has
resulted in a large number of local initiatives focussing on the patient‟s perspective, with
the aim of improving access, outcomes, experiences, and choice for cancer patients.
The Good Practice Guide for Cancer in Primary Care (2004)10
developed as a tool to
improve community-based cancer services by the NHS Modernisation Agency.
The National Lung Cancer Audit (LUCADA, 2004) which collects data on the incidence,
treatment and outcomes of lung cancer in the UK.11 12
LUCADA is a web-based audit. All
organisations caring for patients with lung cancer are encouraged to participate. By 2007,
93% of these organisations were participating. The on-line data collection tool encourages
use of the lung cancer multi-disciplinary team meeting (MDT) as the central point for
capture of information relating to presentation and management, with outcomes such as
the date of surgery and other treatments being entered later. Date of death is automatically
entered through a link to the Patient Demographic Service.13
The Scottish Better Together program (2008) which collects information on the
experiences of patients, and uses this to inform improvements in service design and
delivery.14
Several guidelines on the referral and management of lung cancer as well as guidelines on
clinical standards have been developed internationally. Examples include guidelines by the
National Institute for Clinical Excellence (NICE),15 16
the Scottish Intercollegiate Network
(SIGN),17
the British Thoracic Society (BTS),18 19
the American Society of Clinical Oncology
(ASCO), the Australian National Health and Medical Research Council (NHMRC);20 and the
Scottish NHS Quality Improvement Clinical Standards for the Management of Lung Cancer.21
7
There is currently increased emphasis on the quality of care with aspects such as access,
safety and effectiveness, consistency, equity, patient empowerment and community
responsiveness considered essential.2 22
There has been increased focus on evidenced-based
cancer care with increased use of guidelines and decision support tools, identification of best
practice, development of goals, and development of indicators for measuring quality.23
1.2 National context & relevant existing research
1.2.1 Background The Treaty of Waitangi
24 25
The Treaty of Waitangi, the founding document of NZ (1840), established the ongoing
relationship between the Crown and Māori. Māori were afforded citizenship rights and
protection. Differential access to health services and poorer health outcomes in Māori are
considered breaches of Treaty rights. Therefore an obligation exists under the Treaty to
reduce ethnic inequalities in health care access and health outcomes. Reduction of disparities
within a Treaty framework requires that the principles of partnership, participation and
protection be upheld.26
The NZ Health Strategy
The NZ Health Strategy (2000) provides an overarching framework which guides the NZ
health sector.27
It seeks to ensure „timely and equitable access for all New Zealanders to a
comprehensive range of health and disability services, regardless of ability to pay‟.27
The Primary Health Care Strategy
The Primary Health Care Strategy (2001) provides direction for development of primary
health care.28
It emphasises the central role of primary care within the health system and the
need for the involvement of communities within primary care. The Primary Health Care
Strategy has a focus on reducing barriers and improving access to first-contact services,
especially for groups in greatest need. It encourages multidisciplinary approaches to care and
supports the development of Māori and Pacific providers.
He Korowai Oranga
He Korowai Oranga (Māori Health Strategy, 2002) provides a framework for the health sector
to support whānau to achieve their maximum health and wellbeing (whānau ora).29
He
Korowai Oranga emphasises interdependence and that health is affected by the collective, as
well as the individual. It stresses the importance of working with people in their social
contexts and not just with their physical symptoms.
The NZ Cancer Control Strategy
The Cancer Control Strategy (2003) provides a comprehensive cancer control policy.30
31
This strategy aims to „provide optimal treatment for those with cancer‟ and to „develop
defined standards for diagnosis, treatment and care‟ in order to reduce cancer morbidity and
mortality, and to reduce health inequalities.30
An Action Plan to operationalise the Cancer
Control Strategy was released in 2005.32
Phase 1 actions of this plan involve the mapping and
assessment of cancer clinical pathways, the establishment of standards to ensure timely and
acceptable access to cancer services, the establishment of multidisciplinary and culturally
appropriate cancer care, and the development of a national clinical cancer data set.32
1.2.2 Lung Cancer in NZ33
Lung cancer is the leading cause of cancer deaths in NZ.
33-35 NZ has poorer survival outcomes
from lung cancer than many other developed countries,36-39
and within NZ there are major
ethnic35
and regional inequalities40
in health outcomes. Lung cancer places a heavy burden on
those who suffer from it and on health services.41
The direct costs associated with lung cancer
management in NZ were estimated at $18-28 million for the year 2002.41
Although there are no New Zealand guidelines for the management of lung cancer, the
Australian Clinical Practice Guidelines20
have been endorsed by the Thoracic Society of
Australia and New Zealand (TSANZ), and new referral guidelines for suspected cancer in
primary care have been drafted by the NZ Guidelines Group (NZGG) and will soon be
implemented.42
In addition, TSANZ has developed standards for respiratory services,43
and
8
guidelines for the supportive care of adults with cancer developed by the Ministry of Health
(2008) will also soon be launched.44
The four Regional Cancer Networks have selected lung cancer as the first tumour stream to be
developed. Lung cancer pathways are being mapped and assessed, and optimal care pathways
are being developed to complement international clinical practice guidelines, with the aim of
improving lung cancer care and ultimately improving health outcomes.
1.2.3 Relevant NZ Research Much research has been conducted in NZ in recent years to identify barriers to quality care
for people with lung cancer. Such research has included:
i) Audits of lung cancer management and mapping of the patient journey including:
Timely Access to Oncology Services for People with Lung Cancer in the Auckland
Northland Region Diagnosed in 2004: a retrospective audit of the secondary care
management of lung cancer patients in the Northern Cancer Network.45
It included all
(565) lung cancer patients diagnosed in 2004 in the region. It documented lung cancer
management and assessed if the reported poor outcomes in NZ could be related to the
clinical management received.45
The South Auckland Audit (2009) of lung cancer management at Middlemore Hospital in
2004: a retrospective audit of 80 lung cancer patients referred to the respiratory service.46
These patients were a subset of those included in the Auckland-Northland audit (above).
Lung cancer audit by Mid-Central (Dr Helen Winter et al): a retrospective audit of 167
lung cancer patients referred to the Regional Cancer Treatment Service in 2006. The audit
assessed duration of symptoms until diagnosis. The results of this study are yet to be
released.
Northern Cancer Network‟s lung cancer project:47
this project included data from the
Auckland-Northland audit, interviews with key clinicians, and audit of a sample of lung
cancer patients in 2008.
Central Cancer Network‟s (CCN) lung cancer patient mapping project (2009):12
this
project included the Mid-Central audit by Dr Winter (above), the mapping of the views of
patients and their family/whanau, and a cross data base analysis (data on lung cancer
registrations (2008) for the CCN region were collated using the New Zealand Cancer
Registry, National Minimum Data Set and the National Non-admitted Patient Collection).
Midland Cancer Network‟s lung cancer patient mapping project (2009):47
this project
involved mapping the patient journey in the Bay of Plenty, Lakes and Waikato. It
included consultation with providers, interviews with 18 consumers and an audit of 635
patients who entered hospital for the diagnosis or treatment of lung cancer over an 18
month period in 2007/8.
Southern Cancer Network (SCN) lung cancer patient mapping project (2009):48
this
project involved mapping the lung cancer pathway at Canterbury, Nelson/Marlborough,
West Coast, South Canterbury and Otago. Southland mapping is expected to be
completed by December 2009.47
It also comprised consultation with service providers, an
audit of data for 93 patients with a diagnosis of lung cancer over a 6 month period in
2008, and consumer consultation.
These projects identified several key deficiencies in lung cancer care including :12 47 48
- Lack of guidelines, optimal care pathways, and multidisciplinary care resulting in
unacceptable variations in clinical management both within and across regions.
- Lack of co-ordination of care resulting in numerous appointments and delays to
timely diagnosis and treatment.
- Poor communication between primary and secondary/tertiary care.
- Lack of timely access to investigations (especially radiology).
- Disparities in access to and uptake of services (including oncology treatment and
palliative care services), especially for Māori and rural patients.
- Lack of appropriate support services and information resources for lung cancer
patients and their family/whanau.
9
- Lack of data and performance indicators to enable monitoring and evaluation of care.
- Lack of access to clinical trials.
ii) Qualitative studies to assess access to cancer services (not specifically lung cancer
services) These often included a particular focus on the barriers for Māori.
Examples include:
Access to Cancer Services for Māori project (2005)49
involving a literature search and
interviews of providers and stakeholders with the aim of better understanding disparities
in access for Māori. A stocktake of the interventions to improve access to cancer services
for Māori was also performed in this project.49
Journey of Treatment and Care for People with Cancer on the West Coast (2006)50
involving interviews of health and social services professionals, people with cancer and
their family/whänau, and surveys of all those known to have cancer on the West Coast, to
identify gaps in service delivery and to determine ideal characteristics for a West Coast
cancer service.50
It also involved an international and national literature search on rural
cancer care.50
Cancer Journey of People with Cancer in the Hutt Valley and Wairarapa DHBs (Te
Huarahi o Ngā Tāngata Kātoa) (2006)51
which aimed to investigate the cancer journey
with particular focus on feedback from population groups who experience cancer
disproportionately (Māori and Pacific patients, patients from disadvantaged communities,
and their families/whanau).51
The study involved a literature search and interviews of
people with a cancer experience. Cancer services available in the region and cancer
registrations, hospital admissions and deaths were also reported, and recommendations to
improve the cancer journey in the Hutt Valley and Wairarapa DHBs were presented.51
Tamaki Healthcare Primary Health Organisation (Te Kuenga o Hoturoa PHO) review of
community based service for Maori in ADHB and CMDHB (2006)52
which reviewed
primary care and community-based services available to Māori with cancer. The project
sought to identify existing cancer services, both mainstream and those specific for Māori
and their whanau, and to analyse demographic, utilisation and do not attend profiles for
Māori.52
National Stocktake of Cancer Information Resources Available to Māori by the Cancer
Society (2006)53
Whānau Ora Cancer Care Coordination project (2007)54
by Waitemata DHB and Te
Whānau o Waipareira Trust which aimed to develop culturally responsive models of case
management to improve the delivery of cancer control services and reduce inequalities.54
The Road We Travel: Māori Experience of Cancer (2008)55
which explored the views of
Māori affected by cancer including patients, survivors and their whanau in interviews and
focus groups. It included recommendations for improvements to cancer services.55
iii) Literature searches such as:
Improving Access to Primary Care for Māori, and Pacific Peoples (2000) commissioned
by the Health Funding Authority to review the most relevant literature on strategies that
improve Māori and Pacific peoples‟ access to primary health care services.56
Pacific Cultural Competencies (2008) performed as part of the Pacific Health and
Disability Workforce Development Plan and which included an assessment the role of
Pacific cultural competence in service quality.57
Respiratory Health for Māori by the Asthma and Respiratory Foundation of NZ (Te
Taumatua Huango, Mate He o Aotearoa, January 2009) which focussed on evidence
regarding successful interventions for respiratory conditions, asthma, lung cancer, COPD
and bronchiectasis, especially relating to Māori. The aim was to identify gaps in evidence
relating to successful interventions for Māori.58
10
Disparities and Early Presentation of Cancer by Dr P ten Have (NDSA, March 2009) to
identify causes of late presentation of cancer patients and possible interventions to
address these barriers, as well as the evidence of effectiveness of these interventions.59
iv) Projects on the patient journey or service provision in other diseases Some of this work is of relevance to lung cancer services, including:
Improving Access to Primary Health Care: An evaluation of 35 reducing inequalities
projects. Overview prepared for the Ministry of Health (2005),60
evaluated 35 Ministry of
Health funded projects initiated since 2002 to reduce inequalities. These projects
comprised general practice based community health workers, free or low cost access,
establishing special facilities and outreach services (such as nursing services, transport,
health assessment, youth drug and alcohol services and a medical support service).
Māori and Health Practitioners Talk About Heart Disease61 62
by Te Ropu Whariki and
the Centre for Social and Health Outcomes Research and Evaluation Massey University
(2005). This project explored the experience of health care for Māori with ischaemic heart
disease (IHD) in Northland from the perspective of Māori patients, whanau, and health
care practitioners.
Alternative Pathways for New Patients from the West Coast requiring Colonoscopy or
Cataract Surgery (2007).63
Alleviating the Burden of Chronic Conditions (ABCC Study, 2008)64
which involved a
literature review of service provision and processes for chronic conditions such as CVD,
Stroke, COPD and CHF and evaluated this against best practice to facilitate service
improvement.64
Travel Survey (2008) at Auckland DHB65
including surveys of patients (not necessarily
cancer patients) who did not attend appointments.
Lakes DHB and Rotorua Area Primary Health Services Primary/Secondary ‘Do Not
Attend’ Project (2009) consisted of a summary of DNA initiatives throughout NZ, a
demographic analysis of DNAs, case reviews and an outpatient process stocktake.66
Audits of the management of colorectal cancer. One of these audits detailed the
management of a sample of 642 cases with colon cancer diagnosed between 1996 and
2003 in NZ (2009).67
Another audit detailed the management of patients with colon
cancer in Auckland in 2001 and 2005 (data not yet published).
v) Surveys on primary care Some of this work is also of some relevance to lung cancer care including:
Rural Health Survey (2001)68
which was a nation-wide postal survey of rural residents
relating to demographic characteristics, access to primary health care and hospital
services, use of these services and open questions on local and general concerns. The
project included an international literature search on rural health and access to health
services.
National Primary Medical Care Survey (NatMedCa; 2001/02)69-72
which was undertaken
to describe primary health care in New Zealand. GPs provided data on themselves, their
practice, and reported on a 25% sample of patients over a two week period.70
Tauiwi General Practitioners talk about Māori Health (2002)73
which included
unstructured interviews of 25 GPs in urban Auckland regarding Māori health.
The Commonwealth Fund (2003) National Survey of Physicians and Quality of Care74
which was undertaken to obtain physicians‟ views on the quality of care.
Findings and recommendations from the above projects have been incorporated into the
findings of the literature review presented below.
11
Section 2: Framework for Assessment of Barriers and Best Practice
2.1 The Clinical Pathway The cancer patient journey begins when the person first notices symptoms or signs, or has an
incidental finding suggestive of cancer. The time from the onset of symptoms or signs until
presentation to the health care system is largely dependent on the severity of symptoms,
public awareness of the early symptoms of lung cancer, education levels of the patient and
other complex socioeconomic factors. Delays in this section of the cancer journey are not
fully under direct control of the health system and necessitate broad intersectoral
interventions.
The clinical cancer pathway begins when the person first presents to the health care system.
The initial clinical cancer pathway involves the following critical points (Figure 1):
presentation; referral; FSA; diagnosis; discussion at a multidisciplinary meeting (MDM);
decision to treat or to provide supportive care; and commencement of anticancer treatment.
Investigations and specialist appointments occur throughout the pathway. Delays in this
section of the cancer journey are to a large extent under the control of the health care system.
Figure 1: Critical points within the lung cancer clinical pathway
Referral: GP referral to secondary care FSA: First specialist appointment MDM: Multidisciplinary meeting
The current study focuses on the section of the clinical pathway from first presentation to
health care services until the first specialist appointment (FSA); although the pathway up to
diagnosis has been included. The current study does not cover any events preceding
presentation or following diagnosis.
The clinical pathway for lung cancer is more complex than that shown in Figure 1 and the
sequence of the critical points may vary for individual patients. Patients may bypass primary
care and initially present via the emergency department (ED); diagnosis may be complex
involving numerous investigations and specialist appointments or may occur in primary care
prior to the FSA; the MDM may occur before rather than after diagnosis and the decision to
treat may be made before rather than at the MDM; and some patients may not be discussed at
an MDM.
Typically, the lung cancer pathway involves multiple providers and services and this
introduces the potential for gaps and duplications in care.49 51 71 75 76
Delays may be
experienced at one or more points along the pathway.49 77
Numerous consecutive
appointments and investigations compound the effect of waiting times for individual
appointments, potentially leading to considerable delays to diagnosis and treatment, and
considerable inconvenience for patients.77 78
Anticancer
Treatment
Supportive
Care
FSA MDM Diagnosis
Diagnostic & Staging Investigations
Presentation Referral
Primary
Care
Secondary
Care
12
Delays within the clinical pathway may occur due to:
- Patient factors including non-attendance, cancellation or deferment of investigations or
appointments.
- Physician factors including delayed decision-making regarding referral or investigation.
- Health system (structural or institutional) factors including inadequate capacity or poor
coordination resulting in prolonged waiting times for investigations and specialist
services; and inadequate processes to ensure effective communication leading to referrals
not being acted upon or results being unavailable when required.
Good coordination and communication between the many providers and services is essential
if gaps and delays are to be avoided and a seamless journey for cancer patients and their
family is to be ensured.2 75 76
Early presentation and timely transit along the clinical pathway from initial presentation to
diagnosis are considered essential for optimal health outcomes (both survival and quality of
life), as outcomes are likely to be optimised if diagnosis occurs early enough in the course of
the disease to permit curative treatment options.19 79-82
Accordingly, early presentation and
rapid access to effective health care services (investigations, diagnosis and treatment) were
identified in the Scottish Government‟s Better Cancer Care An Action Plan83
as two of three
„key components‟ of optimal cancer care.83
Similarly, the Cancer Services Collaborative (UK)
selected early diagnosis as one of three main „areas of focus‟ for quality improvement in the
clinical pathway for people with cancer.84
Internationally, substantial effort and resources have been devoted to improving the quality of
cancer care by mapping and streamlining the cancer pathway.14
Determination of optimal
cancer care pathways was identified in the Clinical Excellence in Cancer Care85
report
(Australia) as a major „building block‟ for cancer reform, and care coordination was identified
as one of the „key priorities of focus‟. In the UK, Canada, and Australia, cancer networks,
tumour streams, and optimal care pathways have been developed to improve the timeliness
and consistency of cancer care.14 86-90
Whereas clinical guidelines and multidisciplinary discussion guide clinical decision-making
regarding individual patient care, optimal care pathways guide service delivery and the
broader clinical pathway.8 Optimal care pathways consist of standards developed according to
the best available evidence.8 89
They aim to improve the quality of cancer care by facilitating
the cancer patient journey through improved service organisation and coordination, promotion
of consistency of clinical care through benchmarking to best practice, and by facilitation of
clinical guidelines use and a multidisciplinary approach. 8 89
They include specific targets,
such as the proportion of patients receiving various types of management and targets for
transit times.
The initial phase in the development of optimal care pathways involves mapping the clinical
pathway to provide a clear description of it, identifying critical service intervention points,
and the factors operating at these points.8 86 89 91
The final phase involves determination of the
key requirements for best practice at each critical intervention point, and development of
performance indicators to monitor and audit the newly developed optimal care pathway.8 86 89
Critical service intervention points occur in the pathway where gaps exist between current
practice and best practice.91
Identification of such gaps allows the deficiencies in actual
practice to be identified and rectified.92
Gaps may occur at any of the critical points within the
clinical pathway. For instance, gaps between current practice and best practice may be
detected i) by differences in the proportion of lung cancer patients receiving referrals, various
diagnostic or staging investigations, histological diagnoses etc; or ii) in the timeliness of
transit between the critical points in the pathway. Determination of optimal care pathways
necessitates identification of best practice at each critical point and of optimal transit times
between the critical points.
13
2.2 Dimensions of Quality and Assessment of Best Practice The dimensions of quality provide a useful framework for assessing both the barriers to
quality care and the best practice solutions to deal with these barriers. Quality of health care
services pertains to: 93-95
i) Structure:
Context and Inputs: finance, strategies, facilities, organisation, providers, information.
ii) Performance Activities & Outputs: the processes of service delivery and the degree to which clinical
care reflects evidence and accepted standards.
Outcomes: patient satisfaction with the processes of care (process utility) and health
outcomes (improved survival and quality of life, reduced health inequalities).
Quality is a multidimensional concept which requires assessment from various perspectives.23
96 Numerous authors (including Saltman,
2 Peterson,
97 Donnabedian,
2 Starfield,
42
97 Hogg
22
and Watson93
) and institutions (the American College of Physicians,97
Institute of Medicine,23
Scottish Government,14
Ministry of Health NZ -Outcomes Framework98
) have described the
key attributes of health services and the dimensions of service quality. These are presented
below.
The main dimensions (or domains) of quality of health service performance (Figure 2)
can be summarized as:2 14 23 93 97 98
i) Accessibility & timeliness (ready availability of services) - services which are readily
available without undue delay.
ii) Efficiency (maximisation of the desired outcomes with minimal resource use)
Comprehensiveness: the appropriate range of services (holistic care) provided to
the appropriate population groups at the appropriate times.
Integration: good communication between services and providers and good co-
ordination and collaboration of these services and providers.
Continuity of care99
which is commonly divided into three aspects: longitudinal,
interpersonal and informational continuity.
- Longitudinal continuity (continuous environment) implies ongoing care in the
same place by the same providers so that there is a growing knowledge base about
the patient and a familiar and comfortable setting for the patient.
- Interpersonal continuity (continuous relationships) refers to the ongoing personal
relationship between the patient and a provider such that there is a growing trust
and responsibility.
- Informational continuity (continuous information) means that each provider
caring for the patient has access to current comprehensive information about the
patient.
iii) Safety & Effectiveness (maximal benefit is achieved with the minimal of harm) – this
reflects the extent to which evidence-based competent care is received and achieves the
desired benefit (output or outcome) with the maximum safety (ie with the least harm).
iv) Patient-centredness 95 97 100-103
- care that is appropriate and responsive to the individual
and the community.14
Such care is respectful, culturally sensitive holistic care which
engenders trust and security, and is associated with effective provider-patient communication
and includes the family/whanau.14
Patient-centred services are described as being:95 97 100-103
- Aligned to the patients‟ needs and preferences rather than to those of the provider
or health system.
- Culturally appropriate such that people are treated with dignity and their views
and those of their family/whanau are respected. Such services are acceptable to
minority communities, are provided by a diverse workforce and incorporate
community partnerships.
- Focussed on the patient‟s perspective and engage patients in the care process. For
example, they use patient feed-back and incorporate patient and family
14
knowledge, values, beliefs and cultural backgrounds into the planning and
delivery of care.
- Timely, available and accessible with the provision of local services, convenient
hours, same-day appointments, telephone appointments, email contact, and out of
hours services.
- Associated with information and education. For example, information is made
readily available in appropriate languages and at appropriate levels of health
literacy; treatment plans and follow-up reminders are given; and patients and
families/whanau receive timely, complete, and accurate information in order to
effectively participate in care and decision-making.
- Continuous with a smooth transition between health care settings and coordinated
between different providers to minimise duplication and conflicting advice.
Services should also be comprehensive and include health promotion and disease
prevention as well as treatment.
- Associated with physical and emotional comfort. The health care environment
should be comfortable, and emotional support should be readily available. 95 97 100-
103
Patient-centredness is therefore a dimension of quality that is related to all other quality
dimensions. If care satisfies all other quality dimensions it will be patient-centred.
v) Equity - requires provision of the same standard of care regardless of gender, ethnicity,
geographical location or socioeconomic status.87
It also pertains to all the other dimensions of
quality (ie care should be readily assessable, acceptable, efficient, safe and effective for all).
An addition dimension of quality mentioned in some of the literature is sustainability, which
relates to the organisation‟s capacity to provide workforce and facilities, and its ability to be
innovative and respond to emerging needs.104
Figure 2: Dimensions of Quality
The Cancer Services Collaborative (UK) suggested that quality improvement in the cancer
pathway should focus on three areas, being early diagnosis, communication and support.84
Various authors have suggested different perspectives by which quality should be assessed.
Donabedian suggested three perspectives, that of the patient, the provider and the
planner/policy-maker;2 whilst Campbell and Starfield suggested individual and population
perspectives of quality.22
Individual perspectives predominantly relate to service availability,
effectiveness of clinical and interpersonal care, and the integration and timeliness of care;
whilst population perspectives focus more on equity and efficiency.22
Examples of different quality assessment frameworks described in the literature are presented
in Appendix A. These were used by the Expert Advisory Group to determine the framework
used subsequently in the project to assess best practice recommendations.
Accessibility&Timeliness Efficiency Safety & Effectiveness
Patient Centreness
Equity
15
Section 3: Barriers to Quality Cancer Care
The international literature on barriers to quality health care is vast and difficult to summarise
succinctly. Initially, the concept of access to health care will be discussed, followed by a
summary of the main barriers to quality cancer care. Considerably less literature exists on the
interventions to address these barriers, and most is devoid of sufficient detail on the
intervention, its effectiveness or cost, to enable evidence-based evaluation of the impact of the
recommended interventions. Such deficiencies in the literature have also been noted by other
reviewers.49 56 105 106
The interventions proposed to reduce these barriers are presented in
Section Four.
Background Access to optimal cancer care
Access to cancer care is multidimensional and refers not only to the provision of adequate
services (such that people „have access‟), but also to the timely use of these services (such
that people „gain access‟), and to the effectiveness, relevance and acceptability of the services
(such that people „want access‟).49 56 107
Utilisation of cancer services depends on the
availability, accessibility, and acceptability of services and providers, and these may vary for
different population sub-groups.107 108
Disparities in access to health care services between different ethnic and socioeconomic
groups are well established in the literature. 49 56 105 109-112
Inequalities of access are reflected
not only in disparities in the rates of referrals to specialist services and in treatment rates, but
also relate to the differential experience of the care received.49
Such inequalities in access to
quality care between population subgroups are believed to contribute to disparities in health
outcomes and must therefore be addressed.49 106
Modern concepts of access include entry into, and navigation through, the health care system
and encompass the timeliness and appropriateness of services in addition to the mere
utilisation of services. Therefore access is difficult to measure, and data from multiple sources
and perspectives are needed, commonly including service utilisation measures, patient
satisfaction and provider surveys.56
Both process and outcome measures are required to fully
evaluate access.49 56 61
Barriers to access to optimal cancer care
Barriers limiting access to optimal cancer care are numerous and whilst some operate at
specific points, many operate throughout the cancer care pathway.49
Barriers commonly
coexist and have a disproportionate impact on minority ethnic and socioeconomically
disadvantaged groups.49 105
It is therefore important to consider the aggregate impact of
multiple barriers to care.113
Only by recognising barriers and their impact can strategies be
developed to improve access to quality services.113
Health outcomes (survival and quality of life) are optimised if the person is diagnosed with
cancer sufficiently early in its course that curative treatment options are possible.48 114
This
requires early presentation followed by timely investigation and referral to specialist
services.48
The key components required for optimal cancer care are therefore:
- Early recognition and reporting of symptoms by the patient.
- Rapid access to effective health services (investigations, diagnosis and treatment)
- Clinical expertise of the providers to identify the patients who require prompt
investigation, referral and treatment, and the ability of providers to effectively
communicate the recommended management to the patient.83
Any barriers to these components have the potential to adversely impact on health outcomes.
16
Barriers have been categorised in various ways in the literature. A common categorisation is
the following:49 59 62 106 113
i) Patient barriers:49 59 62 106 113
these relate to demographic factors and social context,
culture, beliefs, attitudes and knowledge. Such barriers commonly inhibit the seeking of
care and impair entry into the health system. Delayed presentation may result from
consultation costs, transportation difficulties, fear, lack of a regular GP or lack of
knowledge about services. In some of the literature these barriers are called primary
access barriers.
ii) System or structural barriers:49 59 62 106 113
these relate to barriers within the health
system. These barriers cause difficulty in obtaining care such as difficulty in obtaining a
timely appointment, advice, referral or treatment and they may restrict both entry into
the system and transit through the system. Such barriers occur as a result of the funding
and configuration of services and the availability of resources (including workforce and
information resources), and influence the physical accessibility of services, waiting times
and appropriateness of services. In some of the literature these barriers are called
secondary access barriers.
iii) Provider or process barriers:49 59 62 106 113
these relate to services operation, the
characteristics of providers and their skills, how providers work together and
communicate with each other and with patients. Such factors predominantly affect transit
through the system and influence the ability of services and providers to effectively
address the needs of patients. In some of the literature these barriers are called tertiary
access barriers.
For the purposes of this project however, barriers will be categorised according to which
dimension of quality (as specified in Section Three) is most affected by that barrier. This is to
facilitate the assessment of best practice subsequently.
Barriers to Quality Care Identified in the Literature As previously stated, any barriers which operate exclusively pre-presentation or post-
diagnosis will not be considered.
3.1 Barriers to accessible care Patient factors and system factors particularly influence whether accessible and timely care is
obtained. Patient factors predominantly influence entry into the health system, whilst system
factors tend to have greater influence on transit along the clinical pathway.
Although early presentation to health care services is crucial for good health outcomes, the
majority of lung cancer cases have advanced disease at presentation precluding curative
treatment.115-118
There is a large amount of literature suggesting that many lung cancer
patients delay seeking care.1 79 119-124
It is however difficult to accurately assess the time from
recognition of symptoms until presentation, due to the non-specific nature of some
symptoms124
and the patient‟s inability to accurately recall symptom onset.125
Some studies
suggest the time delay from the development of initial symptoms until presentation to health
services is 1 - 2 months,1 83 116
whilst others suggest the delay is longer (3 -12 months).119 121-
124 Barriers which result in delays both in seeking care and in transit along the cancer pathway
are presented below.
The main reported barriers to accessible and timely care include:
3.1.1 Financial barriers49-51 61 62 65 69 98 100 105 110 126-130
Cost was frequently cited in both the international and national literature as a major barrier to
access to health care, especially for ethnic minority and socioeconomically disadvantaged
groups. 49 50 61 62 65 69 98 100 105 110 126-130
International evidence suggests that co-payments
discourage health care use by low-income people, irrespective of medical necessity,126
and
this is also reported to be the case in NZ.69 98 100 127
Although financial barriers to primary
health care in NZ have been reported to be high by OECD standards,69 127
recent NZ literature
suggests that the cost of primary care consultations has been reduced since the introduction of
17
Primary Health Organisation (PHOs), and access to primary care has been improved for
vulnerable groups, including Māori and Pacific peoples.62 98 100
According to the 2006/07
Commonwealth Fund Survey, only 2% of adults in NZ were unable to see a GP because of
cost, compared with 6% in 2002/03.98
Lower levels of private health insurance in rural areas
and amongst Māori have however been reported to potentially impair timely access to
investigations and surgical treatment.50 62
Financial barriers not only relate to the cost of consultations, home visits, investigations,
prescriptions and treatment, but also to the costs associated with taking time off work, travel,
accommodation, family expenses such as child minding, and also to concerns regarding value
for money.49 61 105 110 128 129
Transport difficulties and travel costs are acknowledged in the
literature as key barriers to care, especially for Māori and Pacific peoples, despite some travel
assistance options being available.49 60-62 65 98 100 105 110 129 130
In the Auckland Travel Study,65
travel or transport difficulties were associated with 11% of missed appointments. Almost 50%
of these patients did not have any access to transport and an additional 6% could not get time
off work.65
Both absolute costs and payment mechanisms were reported as barriers.130
Although funding
assistance for travel, accommodation and other services may have been available, the
arrangements tended to vary by region and/or organisation, and often reimbursement was only
partial and required initial up-front payment by the patient or their family/whanau.49
Such
issues have particular impact on rural cancer patients and their family/whanau. It was also
noted that certainty of financial support was important49
and that knowledge of available
assistance was variable.51 131
Studies suggested that those most likely to benefit from
financial support may be the least likely to obtain it;50
and specifically that Māori were less
likely to access financial support than NZ Europeans with a similar level of need.131
In the Māori and Health Practitioners Talk About Heart Disease Study, Maori providers
commonly spoke about the poverty experienced by many Māori.61 62
They suggested that this
is a major factor influencing the low utilization of health care services by Māori, and that
poverty is commonly associated with non-attendance at appointments, as basic needs and day-
to-day survival take precedence over health care. 61 62
They also considered that such financial
hardship is not fully appreciated by mainstream health care providers.61 62
A focus on day-to-
day survival to the exclusion of seeking care and fatalistic attitudes toward cancer have also
been reported internationally for minority groups, such as Latinos and African-Americans.106
Whilst financial barriers tend to disproportionately affect disadvantaged groups, some
opportunity costs may actually impact less on the very poor (for instance for the unemployed
there is no requirement to take time off work).105
Also there is evidence that even when
disadvantaged groups have access to low or no fee services and they live close to these
services, they still tend to under-use these services.60 100
Similarly there is evidence that after
controlling for income, access tends to be significantly lower for Māori, suggesting the
presence of substantial barriers other than financial barriers.109
Both national and international
evidence indicates that whilst removal of financial barriers is necessary for equitable access
and improved cancer outcomes, it is insufficient and other barriers must also be addressed.100
106 109 132
Financial barriers also include the inadequate resourcing of services and providers which may
result in lack of services, shortages of health care providers, long waiting lists and so on.50
62
Some NZ literature identified the need for improved resourcing of providers, especially Māori
providers.50
There was evidence that Māori providers were delivering services that were not
funded in order to address gaps in cancer services, such as transportation and support for
cancer patients and their family/whanau.49
Also it was reported that whanau provided much
support and care for which they were not remunerated.49
International literature also
recognises that the economic value of care-giving by families is high.133
18
3.1.2 Geographic barriers 49 56 65 98 126 129 130 134-138
Geographic barriers relate to services not being available at convenient locations. Distance
was frequently considered a major barrier to access to health care in the literature, particularly
for rural populations.49 65 114 130
Centralisation of cancer services is common in NZ and
elsewhere, and is considered a potential barrier to access to cancer care for those living
remote from the treatment site.139
However, whilst some cancer care can be delivered locally,
more specialised care (such as radiotherapy) is often available only in cancer centres located
in major urban areas.14 50
Many people in rural areas suffer from a combination of factors which may impact of access,
including long distances to health care services, socio-economic disadvantage, difficulty in
taking time off work and so on.139-141
Although in the Rural Health Survey in NZ (2001), cost
was considered a greater barrier to health care services than distance, concerns were
constantly expressed regarding the limited range of services available to rural communities,
especially limited specialist services.68
Rural health workforce shortages are ongoing in NZ.
Low numbers per capita of GPs, nurses, and Māori health providers result in under-servicing
of some rural communities.69 142
Geographic inequity of access to health care for people with
cancer is of concern in NZ and has the potential to impact disproportionately on Māori, due to
the geographic distribution of the Māori population.49
Long distances to health care services result in increased transport costs and practical travel
difficulties especially in adverse weather conditions. Considerable anxieties are reported
about getting to appointments, family disruption, time away from work, accommodation
difficulties and expense, social isolation with restricted access to home nursing and home help
services.49 56 65 100 110 127 128 130 134 138 143 144
Such barriers may deter people from seeking care,
potentially resulting in more advanced tumour stage at diagnosis and poorer survival, and
they may also impact adversely on the acceptance of treatment and on decisions regarding the
type of treatment received, which may also lead to poorer survival.56 58 110 136
However, whilst
numerous studies have described an inverse relationship between distance and utilisation of
health care services across various diseases,105 134 139
there is also evidence that patients will
willingly travel long distances for care provided the services are perceived to be of high
quality and worthwhile.62 105
Although the literature consistently reports the difficulties faced by rural communities
regarding access to health care services, there is conflicting evidence regarding urban-rural
disparities in tumour stage at diagnosis and survival.140
This is possibly due to:
- Differences between studies in the measurement of rurality. For example, whether
rurality was determined by population size, distances to nearest hospital or to the
nearest cancer centre, or travelling times to health care facilities.
- Rural access to primary care services not being evaluated (only distance or travelling
times to secondary services were assessed in the majority of studies) and lack of
consideration of available outreach services, such as local specialist clinics and
support services
- Whether the influence of socio-economic disadvantage and ethnicity on stage and
survival were adjusted for in assessing rural-urban disparities.
Also there is controversy in the literature as to whether any observed rural-urban differences
in survival are primarily caused by disparities in stage of disease at presentation (ie delay in
seeking care) or to differences in treatment acceptance. Some examples of relevant studies
with differing results are presented below.
Geographic inequalities in survival have been identified in several countries including
Australia, the USA, Canada and some European countries.135 136 141 142 145 146
Rural cancer
patients have been shown in some studies to have both later stage at diagnosis and poorer
survival than those in urban areas; and much of the rural survival disadvantage has been
attributed to later presentation with advanced disease.141 142 147
For example a Scottish study
suggested that patients who lived remote from the tertiary cancer centre had poorer survival
19
from lung or colorectal cancer because of more advanced disease at diagnosis.141
A US study
indicated decreased utilisation of health care services and increasingly advanced stage of lung
cancer with increasing distance to the nearest hospital.148
A qualitative study on the attitudes
of patients with colorectal cancer suggested that rural patients may delay presentation and be
more tolerant of delays in referral, as they have lower expectations than their more demanding
urban counterparts.134
However, although a French study reported poorer survival with rural residence, it did not
find more advanced stage at diagnosis.135
A study on early stage non-small cell lung cancer in
New Mexico indicated regional disparity in treatment and survival (ie disparities in survival
despite similar tumour stage, as all cases had early stage disease).136
Some US studies found
no significant association between stage at diagnosis and rural residence for patients with
breast cancer, melanoma colorectal, lung or prostate cancer after controlling for
socioeconomic disadvantage.137 140
Another US study suggested urban (rather than rural)
residency was associated with advanced stage at presentation of lung and colorectal cancer
after adjusting for socioeconomic factors.138
It was suggested elsewhere that risks of advanced
tumour stage and poor survival are highest amongst those in depressed urban areas and lowest
amongst people living in large towns in rural areas.140
A UK study, which examined the effect of geographical access to treatment services for
people with breast, colon, rectal, lung, ovary and prostate cancers139
found an inverse
association between travel times and treatment up-take (radiotherapy, surgery and
chemotherapy) for all the cancer types studied.139
Although living in a deprived area was
associated with poorer survival for all the cancers studied, there was no indication that long
journeys to hospital were detrimental to survival.145
The authors concluded that geographic
accessibility to primary care (rather than specialist care) was important for both early
diagnosis and survival.145
This is interesting given that concerns expressed in qualitative
studies tend to focus on access to specialist (rather than primary care) services.68
The literature suggests that both distance and travel times are important considerations when
assessing geographic barriers149
and that these should be considered in relation to both
primary and specialist services.145
Much of the rural-urban disparities in tumour stage at
presentation and survival are considered to stem from differing demographic profiles of the
urban and rural populations, such as age, ethnicity and levels of socio-economic disadvantage,
rather than geographic location per se.140
A multidimensional definition of rurality is
proposed, as the demographic characteristics of the rural population may influence the extent
to which geographic location impacts on access to health care services.114 142
For instance,
rural residents with limited income and restricted access to transport may have difficulty
accessing health care services because of their geographic location, whereas rural residents
with ample resources may not find geographic location a barrier to access.114
Recent New Zealand survival data for cancer (including lung cancer)40
has indicated
geographic inequalities, with people living within rural District Health Boards (DHBs) having
poorer survival from the cancer than those living within predominantly urban DHBs.40
However these are raw data, not adjusted for socio-economic and other case-mix factors. Few
research studies in NZ have compared cancer outcomes between rural and urban patients. A
qualitative study on Journey of Treatment and Care for People with Cancer on the West
Coast indicated that travelling for health care acts as a barrier and can alter choices for
treatment.50
Three NZ studies have compared cancer outcomes between rural and urban
patients, two involved breast cancer143 150
and another involved upper gastrointestinal
cancer.144
These studies did not show any urban-rural disparity in tumour stage at diagnosis or
in survival outcomes. The authors of one of these studies,150
suggested that geographic
location may not have affected access to diagnosis or treatment in the study for several
possible reasons: i) whilst some services (such as radiotherapy) were centralised, follow-up
and delivery of chemotherapy was performed at local clinics and regional co-ordination of
services existed; ii) the geographic distances to be covered in NZ are small relative to some
other countries where urban-rural disparities have been noted; and iii) support by non-
20
government organisations (such as the Cancer Society) mitigates some of the effects of rural
isolation by providing transport assistance and other support.150
Further research is needed in NZ to assess the impact of geographic location on access to
cancer services taking into account the issues raised in international studies, such as the
definition of rurality, consideration of access to both primary and secondary/tertiary services
and the availability of outreach services, and the need for adjustment of the confounding
influence of factors such as socio-economic disadvantage and ethnicity.
3.1.3 Service availability barriers 2 12 48 62 105 151 152
The unavailability of services at convenient times, and long waiting times for appointments,
investigations and treatment are reported to be substantial barriers to timely care.2 12 48 52 62 105
151 152
Insufficient service capacity restricts service availability. Health care workforce shortages
(especially in rural areas), lack of after-hours care, inflexible appointment times, and lack of
ability to contact a provider by telephone or email, all act as barriers to timely access to health
care services.2 57 68 105 128 151-153
Lack of information on services availability and the best way to
access these services is also considered an important barrier.2 59 105
The international literature suggests that when barriers to primary care exist, patients delay
seeking timely care, resulting in their later presentation to ED. This increases pressure on ED
and resulting in sub-optimal use of health care resources.154
Similarly delays in obtaining
referrals, specialist appointments and investigations result in increased presentation of cancer
patients to ED, either because the patient‟s condition deteriorates or to expedite management
as an inpatient.155
In the secondary care lung cancer audit, Timely Access to Oncology
Services for People with Lung Cancer in the Auckland Northland Region,156 157
the most
common pathway used by lung cancer patients to access secondary care was via ED (35%)
rather than via a GP referral to a respiratory specialist (28%), suggesting barriers to either
primary care or to timely referral and assessment.156 157
Lack of available specialist clinics and inadequate availability of radiology or other
investigative procedures cause delays to diagnosis and treatment. Waiting times for both
investigations and their results have commonly been reported as major barriers to access in
NZ.46 48 155 156
The Southern Cancer Network‟s Lung Cancer Patient Mapping Project48
identified „waiting‟ as one of the difficulties in the cancer journey for people with lung
cancer;48
and Central Cancer Network‟s Lung Cancer Pathway Mapping Project12
suggested
particular dissatisfaction in the lung cancer journey with delays to diagnosis.12
GP requests for CT scans are restricted in NZ, unlike in Australia,155 158
and the GP Access to
Imaging Survey (NZ)155
reported that long waiting times for diagnostic procedures were major
barriers to timely care, resulting in increased secondary care referral, increased pressure on
the patient to pay for private procedures, and increased avoidable hospitalisations due to
delayed diagnosis and to GPs‟ advice to their patients to go to ED should their condition
deteriorate whilst awaiting investigation.155
This survey155
and an evaluation of community-
referred radiology services159
concluded that access to diagnostic procedures in NZ varied
considerably across regions.155 159
Audits of the management of lung cancer patients in
Auckland46 156
indicated that outpatient delays in obtaining investigations, particularly CT
scans and CT fine needle biopsies were common.46 156
GPs interviewed in the Southern
Cancer Network‟s Lung Cancer Patient Mapping Project also reported delays in access to
and the reporting of community referred radiology.48
Inefficient service organisation is a major barrier to timely and efficient care. The lung cancer
pathway frequently involves a large number of clinicians, appointments and numerous
consecutive investigations.49 77 78
Service gaps and duplications commonly occur.49 77 78
The
many waiting times have a compounding effect, leading to substantial delays to treatment and
considerable inconvenience for patients.49 77 78
Whilst the effect of treatment delays on lung
cancer survival outcomes remains controversial,14 80 88
it would seem reasonable that
potentially curable tumours at presentation could become incurable if diagnosis and treatment
21
are delayed.88 160
The literature is divided on this issue. Whilst several international studies
concluded that delays did not significantly reduce survival,77 81 161 162
another study
demonstrated rapid tumour growth in patients on a waiting list for lung cancer treatment,
resulting in potentially curable tumours at diagnosis becoming incurable prior to the initiation
of treatment.163
Although it is probable that delay may not reduce survival for those lung
cancer patients with advanced disease, delay may negatively impact on those with potentially
curable tumours (as tumour growth or metastatic spread could occur during the delay,
rendering the cancer incurable).78 82 88 163 164
However excessive waiting times and delays also
impact on the quality of life, and may cause undue anxiety and distress for patients and their
families/whanau.14 165
Waiting times are considered nationally and internationally to be an important component of
quality.14
British literature stresses the need to reduce waiting times to specialist
appointments, investigations, diagnosis and treatment for cancer patients.14 123
In the US, the
Institute of Medicine‟s committee on quality has designated timeliness of care as one of the
six key objectives for health service improvement.23
Many international centres are currently
instituting processes to reduce delays along the cancer pathway.80
In the audits of the management of lung cancer patients in Auckland46 156
a high proportion of
lung cancer patients were not managed within the timeframes recommended by international
guidelines. Times to treatment were longer for patients with potentially curable disease,
despite this group being the most likely to be disadvantaged by treatment delays.156
(Longer
times to treatment for patients with potentially curable disease typically result from increased
diagnostic difficulty in those with a small localised tumour and from the requirement for
precise staging and pre-operative assessment in those to be managed curatively.)
Long waiting times also influence patient attendance at appointments and the necessity to
alter appointment times. In the Central Cancer Network‟s Lung Cancer Pathway Mapping
Project12
half of the patients interviewed had their specialist outpatient appointment cancelled
or postponed at least once.12
In the Auckland Travel Study, 21% of those who did not attend
appointments forgot the appointment for 8% the appointment time was inconvenient; for 4%
the appointment time was changed and 1% did not receive the appointment letter (1%).65
In
the Lakes DHB and Rotorua Area Primary Health Services Primary/Secondary ‘Do Not
Attend’ Project, 40% of DNA patients indicated that their appointment time changed
following the initial appointment notification letter and only 31% of all DNA patients
received a reminder call from the hospital before their appointment.66
Similarly, in the Māori
and Health Practitioners Talk About Heart Disease Study, delay between initial referral and
allocation of an appointment resulted in many either forgetting the reason for the appointment
or not receiving the appointment letter (as their address had changed).62
Other factors influencing the timeliness of care, such as delays due to poor communication or
sub-optimal co-ordination will be discussed later.
3.1.4 Information barriers12 49 58 61 62 64 100 110 124 166
Information barriers are numerous and may delay people from seeking care, obtaining referral
and diagnosis, and may also influence management decisions. Such barriers apply to patients,
their family/whanau and the community, and also to providers.
Information barriers are common in health care settings and in the Māori and Health
Practitioners Talk About Heart Disease Study,61 62
lack of information sharing and poor
communication between health services and Māori patients and their whanau were considered
major barriers to effective health care for Māori.61 62
Lack of appropriate information was
identified as an issue for patients and their family/whanau in the Access to Cancer Services
for Māori Report,49
the Journey of Treatment and Care for People with Cancer on the West
Coast Study50
and the Hutt Valley and Wairarapa DHBs‟ Cancer Journey Project,51
as well as
elsewhere in the literature.167 168
22
Information barriers relate not only to lack of information but also to the way in which, and to
whom, the information is delivered.56 169
Information barriers tend to be greatest for those
with language difficulties.56 169
Provision of information at the wrong time may cause the
information to seem irrelevant or produce information overload.51
Yet provision of
information only once in the lung cancer pathway may be insufficient for understanding.48
Conflicting information from different health providers is confusing and may lead to lack of
trust.168
Information barriers relating to the provider-patient interaction, cultural competence,
communication and coordination between providers will be discussed subsequently. Other
types of information barriers include the following.
Lack of information on what health care services are available and how best to access
these services is commonly reported in the literature as a barrier to seeking care. 2 59 105 124 168
170 Lack of provision of information on private options for care was also commented upon in
the Journey of Treatment and Care for People with Cancer on the West Coast Study.50
Lack of information regarding lung cancer, its symptoms, management and prognosis,
is reported to be a major barrier to optimal cancer care.12 51 59 80 116 121 123 124 161 168
The most
commonly reported reasons why people with possible lung cancer delay presenting to health
care services were related to information barriers, and included:
- Lack of knowledge of warning symptoms of lung cancer51 59
and the difficulty
differentiating lung cancer symptoms from those of benign disease, especially from other
smoking related diseases such as chronic obstructive pulmonary disease (COPD), and a
lack of understanding of when it is appropriate to access health services.12 80 116 121 123 124 161
Appraisal delay (the time during which the patient attempts to determine the cause and
significance of symptoms) is believed to account for the greatest proportion of delay in
lung cancer diagnosis caused by the patient.79
Confusion over symptoms or attributing
symptoms to pre-existing disease also occurs for diseases other than lung cancer, and was
reported as a common reason for delay in seeking care in the Māori and Health
Practitioners Talk About Heart Disease Study.61 62
- Stigma associated with a smoking related disease.80 121 123 161
- Fear, erroneous beliefs, and nihilistic attitudes towards lung cancer, its treatment and
prognosis.1 51 59 80 106 121 123 124 161
In the Hutt Valley and Wairarapa DHBs‟ Cancer Journey
Project, fear was the main reason most people gave for delay in accessing health care
services.51
Fear and suspicion of the health system (rather than fear relating to lung cancer
per se) is also reported in the literature61 62
171
and may result from prior negative
experience of the health system, especially for Māori.110 171
Fear, erroneous beliefs, and
nihilistic attitudes influence both the seeking of care and subsequent management.
Nihilistic attitudes may also exist amongst doctors and these have been shown to vary
according to training and experience, and to influence management.172
Some studies suggest that patients may seek advice from family members, others in the
community, or numerous other providers, such as pharmacists, nurses and alternative
providers, prior to seeing a doctor.121
120
Many lung cancer patients bypass primary care,
initially presenting to ED.157
122
Understanding and knowledge of the early symptoms of lung
cancer by both patients, the community and providers is therefore important to facilitate early
presentation of people with possible lung cancer.
Cancer patients surveyed in an African study,169
expressed a desire to have as much
information as possible about disease outcomes and options for treatment, however most did
not want more information on the physical nature of cancer itself.169
The Access to Cancer
Services for Māori Report49
also suggested the need for appropriate information on cancer
and treatment options. Some literature particularly highlighted the need for quality
information around the time of diagnosis.58 171 173 174
It was suggested that the time of
diagnosis was a particularly difficult time for patients,58 171 173 174
and that communication at
this time could be insensitive and include a lot of medical jargon.51
In the Hutt Valley and
Wairarapa DHBs‟ Cancer Journey Project,51
patients spoke about the difficulty of receiving
and processing information about treatment options at the time of diagnosis, because of
23
shock.51
Insufficient time to process large amounts of information is an issue for many
patients.54
The information is also not always specific to the individual‟s circumstances
making treatment decisions difficult.175
Participatory decision-making relies heavily on the
information provided to the patient by the doctor.176
If patients are not provided with quality
information in an appropriate manner, their participation in the decision making process will
be impaired and they will feel disempowered.51
The amount of explanation of the information
provided has been shown to vary for different ethnic groups and also to influence treatment
decisions in a US study.176
Lack of information and advice on complementary treatment options (such as rongoa
and mirimiri) was also identified as an issue in national and international literature.49 152 169
Lack of practical information on hospitals, transport, parking, and accommodation.10 52
Patients and families also require information on who to contact regarding different
concerns.10
Lack of information on available support (ie support entitlements such as financial
benefits, transport and accommodation assistance; as well as community and psychological
support) was commonly identified as a barrier.49-52 55 131 169
In the Journey of Treatment and
Care for People with Cancer on the West Coast Study,50
the lack of any formal network to
link cancer sufferers was felt to limit opportunities to discuss treatment issues and hamper
decision-making.50
Sub-optimal communication was identified as a major barrier. It is recognised that
information alone is insufficient for adequate communication.56 169
Effective communication
is described as a two-way process, incorporating both verbal and non-verbal messages. It
involves listening, building rapport and understanding the other‟s worldview, in addition to
transmitting clear information that will be understood. The importance of effective
communication was stressed in the literature, and poor communication was identified as a
common problem faced by cancer patients.48 50 167
The mode of information provision was
also considered important. In several studies, Māori patients expressed a preference for face-
to-face communication rather than written information, although additional written
information to take away was also valued.51 55 61 62
Māori patients also commonly commented
on the need to involve family/whanau in information sharing.58 61 62
In the Central Cancer Network‟s Lung Cancer Patient Mapping Project,12
whilst all patients
interviewed acknowledged that the reason for their treatment and its side-effects had been
discussed with them, they did not always understand what they had been told, and only 20%
had been offered written information.12
Understanding the information provided is
particularly difficult in the presence of language or cultural differences and the need for
„plain‟ language devoid of jargon was emphasised.61 62 169 177
The Access to Cancer Services
for Māori Report noted that information designed to meet the needs of Māori patients was
lacking.49
Similarly, a national stocktake of consumer cancer information by the Cancer
Society (2006)53
found that there was no specifically designed cancer information materials
for Māori, and that the available information did not conform with Māori concepts, and it
failed to adequately address Māori needs, concerns, beliefs, health practices, spiritual
practices, and traditions.44 53
The Cancer Society review found little evidence of consumer
involvement in the development of information resources.44
Language barriers are considered to be major barriers to quality care and have been associated
with reduced utilisation of primary care, reduced patient understanding, confusion over
medication, reduced adherence to management and reduced patient satisfaction.128 178 179
Similarly, lack of interpreter services has been associated with poor comprehension and
compliance, patient dissatisfaction and lower quality care.180
Language concordance between
patients and providers has been associated with improved self-reported health outcomes.177 178
181 Patients whose first language is not English are common in NZ.
182 Problems of
misunderstandings, difficulties obtaining an appropriate interpreter, poor quality translation,
confidentiality issues and longer consultation times have been reported.182
Consultation time
24
constraints were seen as a common barrier to effective communication, not only for those
with language difficulties.54 61 62
It should also be noted that many (39% in 2007/2008)183 184
doctors in NZ are foreign medical graduates and even though they must pass an English
examination (if English is not their first language), language and cultural barriers are still
likely to exist.185
Communication issues relating to provider-patient interaction, cultural
competence and ethnic concordance between providers and patients will be discussed in
Section 3.4.
Lack of information resources for family/whanau:58 61 62 133
Family/whanau need to be
well informed as they are active participants in the cancer journey, often playing an important
role in encouraging the patient to seek care, in decision-making and in the provision of both
physical and psychological support.55 61 62 133
International literature also indicates the need
for families to be provided with written information and to be involved in consultations, and
family meetings were recommended.133
The literature also comments that physicians often
lack the training to communicate effectively with family members and suggests that concerns
about violating patient confidentiality can be addressed by asking the patient at the outset
what information should be shared and with whom.133
Lack of processes to coordinate information and to deal with information requests was
identified as an issue in the Cancer Society‟s National Stocktake of Consumer Cancer
Information (2006).53
There was also a suggestion that information availability varies by
region.49
Lack of information for providers. Few GPs see more than one to two new cases of
lung cancer a year, despite lung cancer being one of the most common cancers.121 186 187
The
non-specific nature of many lung cancer symptoms and the high frequency of respiratory
symptoms in primary care make it difficult for GPs to select those patients that require urgent
investigation and referral.119 188
Out-dated knowledge of lung cancer, treatment options and
prognosis, may be associated with clinical nihilism of GPs and respiratory physicians, and
may cause delays in referral and diagnosis thereby limiting the patient‟s access to optimal
lung cancer management.1 116 189 190
Lack of information resources on available support
services may also impair the doctors ability to appropriately advise their patients. Information
barriers relating to the transmission of information between providers is also a barrier to
optimal cancer care.
3.2 Barriers to efficient care Efficiency is an important dimension of service quality, and it incorporates the concepts of
care integration (ie communication, coordination and collaboration), comprehensiveness, and
continuity.14
According to the Optimising Cancer Care in Australia Report (2003)191
lack of
integrated care for people with cancer is a major failing of the health system.75 191
Patients
have indicated that timely coordinated care and guidance through the cancer journey is as
important to them as prognosis and survival.1
Improvements in efficiency can be achieved by streamlining the patient journey, identifying
gaps and reducing duplication.14
Barriers to effective care are predominantly related to system
factors operating as the patient travels along the cancer pathway; although some provider and
patient factors may also influence efficiency.
Barriers to comprehensive, co-ordinated, collaborative and continuous care include:2 10 48-50 96
97 100 103 152 192-194
Fragmentation of care and lack of incorporation of traditional practices
Considerable literature identified the importance of a holistic approach to care, especially to
Māori and Pacific peoples.55 100 171 195
The proportion of patients in NZ that use alternative or
traditional health practices is unkown. However, it is estimated that possibly two-thirds of
patients do so, most without informing or discussing this with their mainstream provider.196 197
Qualitative studies indicate that Māori feel that mainstream services lack a holistic approach
to health, focussing on the physical aspects of health to the exclusion of the spiritual,
psychological and social aspects.55
In the Tauiwi General Practitioners Talk about Māori
25
Health Study73
interviews with GPs suggested that their knowledge of Māori health concepts
and traditional practices was poor.73
Lack of provider-patient communication about the use of
complementary and alternative medicines and traditional practices has been reported as an
important barrier to quality care.152
In the Journey of Treatment and Care for People with
Cancer on the West Coast Study, Māori described the rift between alternative therapies and
western medicine as „unhelpful‟.50
It is suggested by some authors that traditional practices and Western medicine should co-
exist, and that traditional practices should ideally be integrated into mainstream care to avoid
adverse interactions between treatments and to provide continuity of care for the patient.57 196
It is thought that integrating alternative and traditional health practices into mainstream health
care may improve compliance and increase service utilisation,196
by making services more
responsive to Māori.198
Further research is required to evaluate such recommendations.
Fragmented organisational structure of services50
Different funding streams and budgets (such as those for social security, non-government
organisations, community nursing services, primary care and hospital care) can make co-
ordination and collaboration of services difficult and may limit access to the full range of
services.2 50
Similarly different patient catchment areas may be problematic.2 For instance,
primary care practices do not have geographically defined boundaries whereas community
nurses and DHBs supply services to geographically defined populations.2
Lack of the correct mix of health care providers
The increasing complexity of health care has led to greater sub-specialisation, shared care
arrangements and teamwork, as sole physicians can no longer provide the scope of practice
required.14 199
The need for cost containment has led to the substitution of higher cost
providers (such as doctors) by lower cost providers (such as nurses)14 199
Primary care is now commonly provided by teams of health care providers (many part-time)
rather than by solo full-time GPs.2 23
Whilst these arrangements may be more responsive to
patients‟ needs, lead to increased quality of care (due to the diverse skill-mix and availability
of a wider range of services) and result in increased efficiency (through economies of scale,
reduced waiting times and reduced provider burnout),2 151
they can impair continuity of care,
reduce patient satisfaction with the interpersonal nature of care, and erode job satisfaction for
providers.2 199
There may also be payment issues; for instance whether services provided by
non-medical members of the team can attract a fee.199
There is the potential for gaps and
duplication in management, and increased transaction costs resulting from the need for staff
to spend more time communicating with each other.2 It is therefore important to obtain the
correct number and mix of primary care providers, and to ensure effective communication
occurs between them, such that they operate as a team.199
The Access to Cancer Services for
Māori Report highlighted the need to involve Māori providers in health care teams.49
Also in secondary care, multidisciplinary team involvement in cancer care is now common
place.1 14 20 119
Lack of multidisciplinary care is considered a barrier to quality care and it is
widely recommended that all cancer patients should be cared for by a multidisciplinary
team.15 20 32 119
Poor integration of the lung cancer pathway
The cancer care pathway is extremely complex involving multiple providers and services, a
large number of appointments and investigations, and possessing substantial potential for
gaps and duplications in service provision.12 49-51 55 58 71 75 76 200
Similar complexity pertains to
chronic disease management.61
Such complexity necessitates good co-ordination.12 49-51 55 58 71
75 76 200
Poor integration can occur between individual providers, between primary, secondary and
tertiary services, and between mainstream and Māori services.61 62
Poor integration of services
results in inefficiencies and delays in management.12
Poor communication and poor
collaboration between providers, and poor co-ordination of services are considered major
26
barriers to quality cancer care, especially from the patient‟s perspective.2 10 48-50 96 97 100 103 192-194
In the Journey of Treatment and Care for People with Cancer on the West Coast Study,50
lack
of service co-ordination across the cancer journey resulted in patients feeling disempowered,
and poor co-ordination tended to increase with increasing distance from the cancer centre.50
In
the Lakes DHB and Rotorua Area Primary Health Services Primary/Secondary ‘Do Not
Attend’ Project, poor integration and poor communication were identified as major factors in
DNAs.66
Almost 20% of DNA patients were unaware they had missed an outpatient
appointment as they had not received any form of notification of the appointment and only
10% of the DNA patients‟ GPs received a referral acknowledgment letter and only one GP
received a DNA acknowledgement letter.66
Specific barriers relating to poor integration include:48 61 168 194
- Inadequate information sharing between providers or services, such as lack of shared
access to private radiology images,48
incompatible computer systems and lack of
integrated electronic records between providers.2 201
- Inadequate processes for referral from primary to secondary care which may result in
delays and referrals getting „lost in the system‟12
The quality of written referrals from GPs
to specialists may also be sub-optimal. In one study, GP referrals were found to be poor
with insufficient relevant clinical detail in over 50% of referrals.202
- Lack of access to timely diagnostic tests as an outpatient which not infrequently results in
patients being admitted to hospital to expedite investigation.48
- Records, letters or results not being available at the appropriate time.
- Duplication of investigations.
- Numerous appointments which may result in increased non-attendance and which may be
a particular issue for those living in rural areas.61
- Provision of conflicting information or advice.
- Lack of timely information from the hospital or specialist to the GP which may interfere
with the ability of the GP to optimally care for and support the patient at critical times in
the cancer journey.10 12 200 203
Lack of continuity of care
Continuity of care may be jeopardised by a team approach to primary care, by sub-
specialisation and by multidisciplinary teams in secondary care.2 14
It may also result from
patients shopping around different doctors or not attending appointments.12 61
Underlying
reasons why patients shop around or do not attend appointments need to be considered, as
inadequacies of providers and the health system may be contributory. Some reasons identified
in the literature include financial and transport issues, lack of cultural acceptability of services
or providers, fear, lack of understanding of the importance of the appointment, inability to
take time off work, inconvenience, and not being well enough to attend.12 61 65
Lack of
understanding of how the health system is organised and works, and the relationship between
different parts of the system is considered a barrier, especially for disadvantaged groups.1 204
Continuity of care was viewed as an important aspect of quality especially by patients.50 100 200
205 Patients want a relationship with a health professional and this has been reported to be
especially important to Pacific peoples.100 192
Qualitative research also suggests that patients
do not like having to re-tell their story numerous times to numerous different providers, and
consider this a barrier to quality care.192
Patients value a close relationship with their GP.200
They rely upon the GP for clarification of information provided by specialists and for advice
regarding treatment options.200
Patients prefer the familiarity of both provider and setting.200
3.3 Barriers to safe and effective care
The delivery of care to cancer patients must not only be effective but it must also be safe,
such that the desired results are achieved with minimal risk of harmful effects. Care should be
based on the best available evidence of efficacy and safety. Barriers to safe and effective care
include:50 61
Lack of available evidence on best practice.
Lack of communication of the evidence to providers.
27
Outdated knowledge and inadequate skill level of providers.
Variations in care due to lack of multidisciplinary care and individual provider decision-
making.
Variable treatment pathways with differences in the care due to individual clinician decision-
making and outdated knowledge of guidelines is considered unacceptable,50 61
but has been
widely reported in NZ. A survey sent to all respiratory physicians, medical oncologists, and
radiation oncologists in NZ indicated considerable variation between specialities in the choice
of treatment for lung cancer.172
The findings suggested that international guidelines were not
being adhered to and that this treatment variation could potentially impact on health
outcomes.172
The Māori and Health Practitioners Talk About Heart Disease Study,61 62
found
that patients with comorbidities were not referred for appropriate interventions, reflecting out-
dated knowledge of best practice guidelines.62
Similarly in the secondary care lung cancer
audit, Timely Access to Oncology Services for People with Lung Cancer in the Auckland
Northland Region,45 206
treatment rates diverged from international rates as age and levels of
comorbidity increased, suggesting nihilistic and outdated attitudes towards lung cancer
treatment. Also variations in treatment occurred across DHBs after adjusting for case-mix.45
206 Similarly, Australian studies have reported variations in attitudes towards lung cancer
treatment.207
Various specialist groups involved in the treatment of lung cancer have been
shown to have variable knowledge of contemporary evidence of the role of chemotherapy in
the treatment of metastatic lung cancer.207
Such variations in treatment decisions emphasise
the importance of multidisciplinary discussion of management and the need to use clinical
guidelines.172 207
Regional variations in the care of lung cancer patients have been attributed to
the lack of national guidelines, as differences in regional interpretation or use of international
guidelines have occurred.48
3.4 Barriers to equitable and patient-centred care Ethnic and socioeconomic inequalities in health care and health outcomes are of major
concern, both internationally and in NZ. Whilst the latest report in the Decades of Disparity
series208
suggests that ethnic and socioeconomic inequalities in mortality in NZ may no longer
be widening,208
inequalities in cancer outcomes remain disturbing. Health system
responsiveness to the needs of different population subgroups98
and the interpersonal aspects
of care are considered to be major contributors to disparities in health care quality and
outcomes.61 209
A large body of literature, including the US Institute of Medicine‟s Unequal
Treatment: Confronting Racial and Ethnic Disparities in Health Care Report,210
suggests that
minority groups within the community often receive lower quality health care, and are
typically less satisfied with their care than the white majority.209-219
Equitable patient-centred services are those which are equally responsive to the needs and
values of the individual and the various groups within the community. Such services are safe,
effective, efficient and readily accessible to all, irrespective of ability to pay, geographic
location, ethnicity or language.95 97 100-103
The quality dimensions of equity and patient-
centredness are interwoven through all the other dimensions of quality, and they are
considered integral to improving health care quality.101
Barriers to equitable patient-centred
care impact on both entry into the health care system and transit through it, and
predominantly relate to system and provider factors, although patient factors may also be
contributory.
Barriers to equitable and patient-centred care include:
Lack of health system responsiveness to the community and to subgroups within the
community. Whether people seek and use health care services depends on how comfortable
they feel with these services.110
Comfort is influenced by the physical environment, the way
the services are delivered and the individual attitudes of providers.110
Therefore, system
factors, such as the physical health care environment, the organisation of the services and
their orientation, influence the acceptability of health care services and the patient‟s
experience of care.
28
In the Improving Access to Primary Health Care: An evaluation of 35 reducing inequalities
projects. Overview prepared for the Ministry of Health (2005) report, the unease experienced
by some people with the health care environment was identified as a barrier to accessing
services.60
The waiting room was reported to be „officious and intimidating‟, the staff
„unwelcoming‟ and interactions with doctors „frightening‟.60
It is widely accepted that health care services should be flexible and responsive to the
different needs of different people; thus being respectful, supportive, culturally sensitive and
holistic.100 220
However in reality, services tend to be oriented towards the majority,12 51 54
and
they are commonly organised to suit the provider rather than being organised according to the
preferences of patients and the community.50
Mainstream services which lack cultural
appropriateness (or as Jansen says „cultural fit‟)110
are reported to impact negatively on the
use of health services by Māori, Pacific and other ethnic groups.12
Lack of a whanau ora
approach to care, lack of dedicated Kaupapa Māori cancer services and insufficient numbers
of Māori providers are considered important barriers to cancer care for Māori. 49 52 55 58 128
Adequate time is required to foster a good therapeutic relationship and rapport.169 171
Sufficient time is also necessary to enable the large amount of information provided to cancer
patients to be processed. Sufficient time during the consultation has been noted to be
especially important for Māori,52 55
and for rural patients who must travel long distances even
for a short appointment.50
Yet repeatedly in qualitative studies patients state that the time
allowed in consultations is insufficient,12 50 54
and this is considered an important barrier to
quality care. Another barrier to effective communication and the development of rapport is
the increasing time that doctors spend using the electronic patient record during the
consultation.221
Frequent viewing of the computer may reduce the display of empathy by the
provider and the disclosure of psychosocial concerns by the patient.221
Cancer patients and their family/whanau require extensive support along the cancer pathway.
Lack of access to community and psychological support services were commonly identified
as a barrier to quality care in several studies, including the Southern Cancer Network‟s Lung
Cancer Patient Mapping Project,48
the Central Cancer Network‟s Lung Cancer Pathway
Mapping Project,12
and the Access to Cancer Services for Māori Report,49
as well as in other
literature searches.59
Mapping studies identified that in many DHBs, social support is not
offered to patients early enough in the cancer journey and that processes for referrals to
support services are generally poor.12
Lack of access to counselling services for people living
in rural areas was highlighted in the Journey of Treatment and Care for People with Cancer
on the West Coast Study.50
The Southern Cancer Network‟s Lung Cancer Patient Mapping
Project,48
specifically noted a gap in „korero support‟ (group/talking support) for Māori.48
It
was also noted that the support services available to cancer patients and their family/whanau
vary across regions;222
and that interpretation or application of eligibility criteria also varies.49
Whilst the Cancer Society was identified as a key support for cancer patients in several
studies,12 49 50
some Māori patients and their family/whanau commented that they did not feel
comfortable approaching the Cancer Society.48
Lack of effective provider communication skills and sub-optimal provider-patient
interaction. Good rapport and a good provider-patient relationship are considered essential for
the development of trust,51
and these are associated with greater patient participation in care,
less cancellation of appointments, fewer do not attends, increased acceptance of
recommended management and greater satisfaction with care.152
Characteristics of providers
including their training, competence, communication skills, perceptions and biases strongly
influence the provider-patient interaction and shared decision-making, and thereby impact on
trust and the quality of care.55
Although such factors affect the quality of care for all patients,
difficulties in provider-patient communication disproportionately affect vulnerable subgroups
within the population.152
Difficulties in the provider-patient interaction are commonly
reported to stem from differences between the provider and the patient in culture, language,
education levels,223
social class or gender.105 106
29
Cultural differences have commonly been reported as key barriers to care by both patients and
providers.61 62
Lack of a shared background and shared understanding creates a distance
between the provider and patient which makes it more difficult to establish effective
communication and a trusting relationship, and impacts on the care received.204 224 225
When
culture and/or language differences exist, information and perspectives can be lost or
misinterpreted.226
Analysis of how culture influences the quality of the provider-patient
relationship suggests that when patients and providers have different ethnic backgrounds (ie
discordant ethnicity), patients are less likely to engender an empathic response from the
provider, establish rapport with the provider, receive sufficient information and be
encouraged to participate in decision-making.225 227
Misunderstandings between providers and
patients may also occur when they have discordant ethnicity and this may lead to
inappropriate use of health services, increased risk of incorrect diagnoses, lower adherence
with recommended management, reduced patient satisfaction and more demanding
consultations for providers.223
Some literature suggests that ethnic disparities in the quality
and satisfaction with health care are due to differences in education levels, socio-economic
factors, and health status rather than in ethnicity per se.228
Whilst a US study found that ethnicity had little effect on physician behaviour or on the
medical care received;229
the National Primary Medical Care Survey (NatMedCa)71
found
evidence that in NZ, GPs had lower levels of rapport with Māori and Pacific patients than
with non-Māori non-Pacific patients and that they treated Māori patients differently from non-
Māori patients.71 100
Some Māori patients in the Road We Travel: Māori Experience of Cancer
Study55
considered mainstream providers to have a poor attitude and to be unresponsive to
needs, especially relating to information provision.55
Pacific patients in the Hutt Valley and
Wairarapa DHBs‟ Cancer Journey Project51
felt that mainstream providers did not always
understand their cultural beliefs, spirituality and use of traditional healing.51
However it is
considered that the ethnicity of the provider was less important than their personal qualities
such as compassion, sensitivity and respect.55
In the Access to Cancer Services for Māori Report,49
the characteristics of providers such as
training, competence, perceptions and biases, and provider-patient communication were
identified as factors with the potential to impact on access to cancer services for Māori.49
Similarly, other literature suggests that discrimination in health care settings commonly
results from biases, stereotyping and difficulties with communication. 101 106 152 211 230 231 Some
literature explored the effects of negative stereotyping by providers73 171 232 233
Such
stereotyping particularly relates to late presentation, non-compliance and treatment
preferences and has the potential to influence the provider-patient interaction, treatment
recommendations and access to care.106 168 234 235
In the Tauiwi General Practitioners Talk
about Māori Health Study,73
non-Māori GPs expressed frustration with Māori relating to non-
compliance and not attending appointments, and also with the perceived need for longer
consultation times.73
However, the National Primary Medical Care Survey (NatMedCa)71
indicated that Māori received significantly shorter GP consultations than Europeans.71
Also in
the Māori and Health Practitioners Talk About Heart Disease Study62
providers commonly
commented about the mobility of Māori patients across different health providers and their
non-attendance at appointments.62
and providers stated that whether they would refer
depended on the likelihood of the patient attending the appointment; and they also believed
Māori would be likely to decline surgical intervention.62
Unconscious bias and stereotyping
impact on the care delivered101 215 231 236
101
and have the potential to contribute to disparities in
health outcomes.237
The Medical Council of NZ emphasises that diversity occurs across
communities and between individuals;238
hence stereotyping is inappropriate and care should
be individualised.238 239
These issues of bias and stereotyping are not restricted to NZ. A UK
study indicated that GPs held negative stereotyped beliefs relating to Asian patients with
respect to non-compliance, the need for longer consultation time and inappropriate use of the
health system.240
In a US study, physicians expressed less satisfaction in clinical encounters
with immigrant patients especially relating to preventive care and chronic disease
management.241
Other US studies suggest that African American and other ethnic minority
30
patients rate their visits with white physicians as less participatory than white patients.215 242
A
study in the Netherlands suggested that Dutch doctors spent more time trying to understand
immigrant patients, but showed more involvement and empathy with Dutch patients.223
Other
frustrations of Western doctors in treating minority ethnic groups related to the increased time
required for decision-making, the wider family involvement in decision-making and the
involvement of traditional healers.169
Patients’ beliefs, preferences and health literacy levels180 214
Patients as well as providers bring socio-cultural perspectives to the health care encounter
101
which can influence the provider-patient interaction.210 243
The beliefs, preferences, attitudes,
education and health knowledge of patients are important determinants of health care
behaviour.214 244
Such factors influence the recognition of symptoms, the seeking of care,
communication of symptoms to providers, decision-making and acceptance of recommended
management, and also influence patient expectations and satisfaction with care.57 61 93 100 180 211
236 245-249 Patient satisfaction has been shown to be influenced by prior expectations of what
will or should happen.105
The Improving Access to Primary Health Care: An evaluation of 35 reducing inequalities
projects. Overview prepared for the Ministry of Health (2005) report identified a „cluster of
barriers‟ around „dignity and identity‟, social isolation, and disconnectedness from
mainstream services.60
For example, embarrassment in the waiting room regarding unpaid
fees, reluctance to ask for financial assistance and lack of rapport with staff act as barriers.60
Previous negative experiences with the health care system engender mistrust and low
expectations, which impair the utilisation of health services and acceptance of recommended
management101 106 128 170 171 250
and also lead to reduced satisfaction with care.236
249
Variations
in the care experienced by different groups may reflect real differences in care or alternatively
reflect differences in expectations and perceptions, or a combination of both.220
A study on
lower surgical treatment rates for black patients suggested no difference in the extent to which
treatment was offered, but rather differences in the rate of acceptance due to patient
preferences, beliefs and trust.250
Education levels and health literacy have been shown not only to influence patient behaviour
but also provider behaviour. A Dutch study221
involving videotaped GP consultations found
that well-educated patients asked more questions and had longer consultations with greater
dialogue than less-educated patients.221
Similarly, other studies have found that well-educated
patients from higher socioeconomic backgrounds receive more information.152 251
In the
Commonwealth Fund‟s Health care Quality Survey, health literacy had a strong influence on
the quality of the provider-patient interaction, satisfaction with health care and impacted on
the use of health services.214 252
In the Māori and Health Practitioners Talk About Heart
Disease Study,62
practitioners identified features of patients that were associated with poor
communication. These included being passive about health, failing to speak up about health
care options, not being compliant, not effectively communicating symptoms or problems and
not providing feedback to the practitioner on their health.62
31
Section 4: Interventions to Reduce Barriers to Quality Cancer Care
Numerous interventions are recommended in the literature to improve the access to quality
cancer care. However there is a paucity of evidence-based evaluation of many of these
interventions.
Interventions commonly address several dimensions of quality. For example, interventions to
improve the availability and timeliness of care may also improve the efficiency, equity and
patient-centredness of care. Therefore any separation of interventions into distinct categories
is somewhat artificial, as considerable overlap exists. Some of the interventions recommended
in the literature are general measures to improve health care services and are not specifically
be related to lung cancer care. Some of these are beyond the scope of the current project.
Commonly recommended interventions to minimise barriers operating in the relevant section
of the lung cancer pathway are presented below.
4.1 Interventions to improve the accessibility of care
4.1.1 Financial assistance (largely outside the scope of this project) Improved subsidies for primary care consultations.
51 59 Universal free access to
primary care is considered essential to improve health care access. Not only does it have the
potential to improve overall access and equity, but it also leads to reduced demand and stress
on secondary care services. The Improving Access to Primary Health Care: An evaluation of
35 reducing inequalities projects. Overview prepared for the Ministry of Health (2005) report
suggested continuation of increased consultation subsidies in NZ, with special funding for
some groups, such as very poor rural Māori.60
Improved funding of providers, especially Māori providers.50
Improved financial support for whanau.50
Short-term assistance with child-care to enable cancer patients to attend
appointments.49
4.1.2 Transport assistance Subsidised transport or taxi/petrol vouchers.
49 56 59 105 There is evidence in the literature
that transport assistance increases service utilisation.56
However, it is necessary to ensure that
patients and their family/whanau are adequately informed about their entitlements and any
assistance available to them.51
It is also considered important to ensure that the claims process
is streamlined and acceptable.50
Qualitative studies (for example, the Journey of Treatment
and Care for People with Cancer on the West Coast study) suggested that the process of
claiming reimbursement can be degrading and full of „red tape‟, and that some people who
require assistance are not eligible for it, as they do not hold a Community Services Card or
High User Health Card.50
Volunteer drivers or courtesy vans.51 105 129 253
Provision of these services tends to vary
across regions and they are provided in some areas by NGOs, such as the Cancer Society, Red
Cross and Lions Club.51 253
Transport may also be provided by Māori providers in response to
patient need. Findings from the Improving Access to Primary Health Care: An evaluation of
35 reducing inequalities projects. Overview prepared for the Ministry of Health (2005)
suggested that although transport was a key unmet need, it is not an efficient use of health
worker time to provide patient transport.60
The report suggested that a nationally coordinated
approach to the provision of transport services is needed, possibly utilising volunteer
drivers.60
Whilst transport services provided by volunteers are greatly appreciated and
commonly used, there is little evidence of their effectiveness. In the UK, whilst a volunteer
transport scheme was well used to help the disadvantaged get to appointments, there was no
evidence that it reduced missed appointments or improved utilisation of services.254
In a NZ
study, patients with COPD undergoing an outpatient pulmonary rehabilitation program were
provided with free door-to-door transport in an attempt to increase attendance.255
However
despite this free transport only 40% of these patients attended 75% of the sessions.255
Accommodation assistance for rural patients and their family/whanau:49 55 59
A
comprehensive transport and accommodation package readily available for those in need has
32
been recommended,50
although evidence of impact on service utilisation or health outcomes is
lacking.
Provision of up-to-date information on transport and other assistance and
information on eligibility criteria should be provided to providers and the community, so that
patients and their family/whanau can be appropriately informed and supported.51
Community
support along the cancer pathway has been suggested to reduce differential access to financial
and other resources. 58
4.1.3 Provision of services close to the rural community64 105
Frequent specialist clinics
59 64 127 and other outreach services such as community nurses, other
primary care providers and other community-based services is recommended.49 59 64
Outreach
specialist clinics held in GP surgeries or in community hospitals are believed to have
advantages for patients, as they are conveniently located in more familiar surroundings and
they reduce the time and expense required for travel.256
There was some evidence in the
literature of the value of outreach services for other conditions, although not specifically for
cancer.59
Evaluations of outreach clinics in primary care in the UK256 257
have shown that
patients preferred outreach appointments to tertiary hospital appointments, and that the costs
to the patient were less; although costs to the NHS were increased, as specialists tended to see
fewer patients in outreach clinics than in hospital clinics and they had to spent time
travelling.256 257
No consistent differences in health outcomes were evident from the provision
of outreach services.256 257
The Improving Access to Primary Health Care: An evaluation of 35
reducing inequalities projects. Overview prepared for the Ministry of Health (2005) report
suggested that it may not be financially viable for individual practices to provide outreach
services (such as nurse or community worker home visiting or transport) to hard to reach
patients, but that the provision of these outreach services may be possible by the pooling of
resources.60
There was a strong suggestion in the literature that for outreach to be successful,
it must be planned in conjunction with the local community.59
4.1.4 Improved telecommunications50 68 258
Increased use of telephone, email consultations, and audio-video conferencing has been
recommended.2 68 151 152 202
After hours telephone advice provided by nurses is commonly used in the UK.194
Studies of e-
mail in health care indicate growing prevalence, desirability and acceptance from both
patients and physicians.258
Patients have reported that e-mail is more efficient than the
telephone for patient-physician communication.258
However there are some issues around
privacy, access, literacy, and e-mail overload.258-261
Also, rural access to such services may
not make email a viable option for all rural residents.68
An audit (2002) of email
correspondence between lung cancer patients and the nurse specialist in the UK, indicated
that the service worked well and that fears of increasing the burden on an already busy
workload were unfounded.262
The majority of emails related to advice or an update on the
patient‟s condition, an appointment or transport query or a request for a letter; the nurse
generally responded by a short email or occasionally by phone.262
Telemedicine may improve referrals and provide support for health providers in rural areas.50
Two-way video-conferencing can be used to link health care providers to patients and other
health care providers at a distance.263
This has been used successfully in Canada to reduce the
need for rural patients to travel long distances for a specialist appointment.263
Literature
reviews of telemedicine and teleconsultation264-266
suggest a deficiency of rigorous evaluation
of clinical effectiveness and cost.2 202
However, patients may benefit from substantial savings
in travel costs and time, and from more rapid specialist consultation.2 Providers may benefit
from the immediate exchange of clinical data and interactive teaching.202
Technical problems
and the organisational complexity of scheduling at least two doctors and the patient to be
available at the same time have been reported.202
Technology has however improved greatly
in recent years and cheap effective equipment is now readily available.202
33
4.1.5 Improved information Initiatives to improve public and professional awareness of the early warning signs of
cancer, correct mis-information, and inform of service availability, and how and when to
access them.48 59 105 116 121 267
There was a recommendation that public education programs should be targeted at risk
groups, rather than at the general population.267
No evidence of the success of various
approaches was however available. Note that public education on the early signs of cancer
although vitally important is outside of the scope of the present project, which begins at
presentation of the patient to health care services.
Continuing education of providers and resource material for providers including referral and
management guidelines were recommended.116
In NZ, new referral guidelines for suspected
cancer will soon be launched. The Access to Cancer Services for Māori Report suggested
workshops for Māori providers on cancer and cancer services.49
In the UK, various provider
groups have been increasing awareness of the early symptoms of lung cancer amongst their
members to promote early diagnosis.268
In the UK, the development of a risk assessment tool
to help GPs assess the need for referral has been recommended.121
Provision of appropriate information to patients in a variety of ways. Face-to-face communication
51 53 with audio taping of consultations
105 and supplementary
written information to take home,51 105
and written decision support tools105
are all
recommended. Telephone helplines (such as that provided the Cancer Society, Ph 0800
226237) may be another important information source.44
Although the internet is being used
increasingly by cancer patients, information quality is variable, and evidence suggests that it
can lead to confusion.44
Personalised booklets, audios or summaries of consultations have been shown to be helpful in
improving patients‟ cancer knowledge and recall, symptom management, level of satisfaction,
and health care utilisation.44
A comprehensive resource pack for newly diagnosed patients has
been suggested.269
This pack should contain standard information on the type of cancer with
supplementary information relevant to the individual patient. It should include information on
available support services (with contact details) and recommended internet websites including
those for CAM.269
A comprehensive cancer information service specifically for Māori has
also been recommended.52
An „information prescription‟ has been suggested in the UK to empower the patient. It is
given to the patient at diagnosis and at other critical points in the cancer journey. „Power
questions‟ and other decision-making tools have been useful in ensuring that patients are at
the centre of the decision-making process and ask all the questions they need to in the
consultation with the provider.121
Decision aids for patients (either paper or electronic) may
be useful to assist patients in the decision making process.270
Decision aids should include
evidence-based information about treatment options, a balanced presentation of the
advantages and disadvantages of each option, and information from the patient‟s perspective
to help them clarify their preferences for treatment.270
Objective CAM information is
recommended, as current resources are few and what does exist commonly does not comply
with quality standards.44
Information should be in simple plain language and not contain jargon and should be relevant
for the patient.48 51
A range of different information at different points along the cancer
pathway is recommended to ensure relevance and avoid information overload.10
Information
regarding what services are available and how to access these services is suggested for all
patients.2 The information should be culturally appropriate and some should be specifically
targeted at Māori cancer patients.53
Materials targeted at underserved populations have been
shown to be more effective at reducing inequalities than non-targeted material.53
34
Health Point (www.healthpoint.co.nz) is an internet resource for providers and patients on
local services. A national clearinghouse has been suggested to review, disseminate and
evaluate cancer information resources.44
Provision of written information in appropriate languages
It is recommended that written information in an appropriate language be offered to each new
patient.51 166 203
Different information should be provided at different times in the patient
journey and should include general background information, details of diagnostic tests,
information on local facilities and support services, who to contact regarding various issues,
lung cancer, and treatment options.51 166 203
The literature warns however, that written material assumes a certain level of literacy which
may or may not exist.271
The Access to Cancer Services for Māori Report suggested the
publication of existing cancer resources in the Māori language and the development of tools
to assist services and health professionals to communicate effectively about cancer and cancer
care with Māori patients and their whänau.49
One article suggested that popular resources for
Māori contain „partial translation of common recognisable terms‟ as not all Māori are literate
in Te Reo Māori.128
Some literature suggests that all material originally written in English
should go through a process of „cultural adaptation‟ as opposed to translation, in order to be
appropriate for the target population.272
Printed appointment cards, especially for Pacific patients, were recommended in Hutt Valley
and Wairarapa DHBs Cancer Journey Project.51
A directory of Māori and mainstream services, information sources and sources of
support was recommended by and is being compiled by the Cancer Society.53
This should be
supplied to all providers involved in the treatment of lung cancer, and it must be kept up-to-
date.
4.1.6 Available professionally trained interpreters57 64 173 178 182 273
The literature acknowledged the need for professional medical interpreters, even when only
minor language barriers exist, and it commented upon the underutilisation of interpreters.57 64
173 182 273 Some literature categorised provider-patient communication into two main domains:
i) technical communication relating to the process of care (the purpose of tests, treatment,
appointments etc) and ii) patient-centred communication relating to the patients concerns, the
nature of the disease and prognosis.177
Interpreters were considered most useful for the
former, whereas ethnic-concordant providers were most effective for the latter, as this type of
communication was particularly sensitive to cultural barriers.177
Use of professionally trained medical interpreters was reported to be associated with
improved communication, patient satisfaction and adherence with management.178
There was
little information on the cost effectiveness of professional medical interpreter services.
Usually interpreters must be scheduled in advanced, so may not be available in more urgent
situations. It should be noted that the literature warns against the use (where possible) of non-
professional interpreters, such as family members.178 182 271
Telephone translation services are
available, and in the US, remote-simultaneous translation (using ear-phones and microphones
and a remote translation service) is available.271
Software translation programs also exist,
however these are limited as currently only closed-ended questioning is possible.
4.1.7 Flexible service delivery57 105 128
These recommendations relate to general measures to improve access to health care services
and are largely outside the scope of this project.
Readily available and conveniently scheduled primary care appointments during core hours
with sufficient time for individual appointments, extended opening hours, and home visits are
recommended and should occur in an appropriate and friendly environment.2 65 68 151 152
Appointment times should allow for travel time and not be booked for early in the morning or
late in the afternoon for rural patients.50
Patients should not be kept waiting for long periods at
these appointment.68
Walk-in clinics were also recommended.60
Longer consultations with
35
health professionals to support effective communication were also recommended.61
Such
service provision requires adequate workforce and other resources. The difficulty of
providing after hours care in rural areas (such as the financial cost of such services and the
problems for health care professionals in obtaining sufficient time-off) was raised in the
Journey of Treatment and Care for People with Cancer on the West Coast Study. 50
In the UK, access to primary care services has been improved by walk-in clinics, direct call in
centres, a 24hr telephone nurse advice service, and GPs working in large co-operatives to
provide out-of-hours care.2 194
In Denmark, initiatives to improve access have included same
day appointments and walk in clinics.97 194
Also clinics are available in the evenings and after
hours consultations are available following initial telephone triage, where a physician has
access to the patient‟s health registry information and an electronic prescription system
connected to local pharmacies.97 194
The telephone triage is reported to have led to some
decreased patient satisfaction, as patients prefer face-to-face consultation.274
Following any
after hours consultation an email is sent to the patient‟s primary care provider with details of
the consultation and treatment, and if the matter is urgent the provider is phoned to ensure
appropriate handover.97
In the USA, „advanced access‟ (also called open access, or same-day
scheduling) has been suggested to facilitate ready access to primary care appointments.275
4.2 Interventions to improve the timeliness and efficiency of care A regional network approach to the diagnosis and treatment of cancer is considered effective
in streamlining the clinical care pathway, reducing fragmentation of service delivery,
improving resource use and thereby improving service effficiency.48 51
Recent reforms in the
UK, Finland, Sweden have involved the development of networks with increased cooperation
and coordination across primary care and specialist care.2 Some literature refers to
„transmural care‟. This is a new form of care that break down barriers between primary and
secondary care with primary and secondary providers accepting joint responsibility for care
with specification of delegated responsibility.2 Clinical referral and management guidelines
and the specification of clinical pathways are examples of interventions used to achieve
transmural care.2 Clinical pathway work has involved the development of referral and
discharge protocols, clinical agreements regarding investigations and treatments, the
appointment of navigators, co-ordinators or liaison nurses, the formation of tumour networks
(or tumour streams) and the development of patient information resources.2 Re-organisation
of service delivery to streamline care includes the interventions below.105
4.2.1 Improved access to diagnostic technology and reporting48 121 155
Direct access of GPs to the ordering of CT scans.
155 159
There is international and national evidence that direct GP access to radiology improves
access to diagnostic procedures for patients, reduces waiting times for specialist
appointments, and is associated with high levels of provider satisfaction.155 159 276
A NZ pilot of direct GP access to CT scans was considered highly successful and is discussed
in Section 5.1.3. An audit of CT requests by GPs in Australia (where GPs have unrestricted
access to CT scans) found that some CTs had been ordered without a prior CXR and many
CTs could have been replaced by cheaper tests.158
However this audit involved all CT
requests not only those for suspected lung cancer, and some patients with negative tests no
longer required specialist referral.158
A similar audit of non-respiratory specialists in a hospital
setting also indicated a high proportion of inappropriate CT requests.158
The study suggested
upskilling of GPs in the indications for CT scans and that all requests for high-dose
radiological examinations should be reviewed by a radiologist before the test is performed,
although a potential conflict of interest for private radiologists was acknowledged.158
Direct
GP access to CT scans has been initiated in the UK and preliminary evaluations indicated
reduced waiting times for outpatient appointments and more rapid lung cancer diagnosis.155
‘Straight to test’ – A CT scan is arranged directly by the radiologist, if the CXR shows
an abnormality suggestive of lung cancer.277
Performing a chest CT prior to the FSA has been
36
shown in the UK to substantially reduce the time to diagnosis.277
This will be further
discussed in Section Five.
Measures within radiology to improve access to diagnostic procedures have been
recommended including :
- diagnostic outsourcing278
- utilisation of private provider capacity during periods
of high demand (within available funding)48
- mobile radiology solutions278
- use of radiology services out of hours278
- utilisation of a quality voice recognition dictation system to improve the reporting
time outputs.48
Use of this has been effective in reducing reporting times in
Canterbury.48
- monitoring and review of reporting targets for urgent x-rays.48
Electronic receipt of radiology and pathology results 2 In many countries GPs receive
radiology and pathology results electronically; and clinical decision support tools are being
developed to assist interpretation of these results.2
4.2.2 Interventions to facilitate good communication within the health system Dedicated phone lines so that GPs can have easy access to advice from senior
specialists98
Improved processes for referral10 202
In several countries, structured referral letters or
referral templates have been developed, and as a minimum contain personal information
about the patient, doctor identification and contact details, signs and symptoms, any results of
investigations and the reason for the referral.83 202
Examples are provided in Section Five.
Acknowledgement of referrals48 51 119
– It has been recommended that DHBs send an
acknowledgement letter to the GP confirming receipt of the referral and the appointment
date.48 51
In the Lakes DHB and Rotorua Area Primary Health Services Primary/Secondary
‘Do Not Attend’ Project, such referral protocol was commonly not followed and <10% of GPs
of DNAs patients had received notification of the appointment from the hospital.66
It is recommended that referral of patients to outpatients should involve a process to identify
those at high risk of non-attendance.66
Patients who are Maori, Pacific, live in NZDep quintile
five areas and those with a previous history of DNA have a high risk of DNAs in the future.66
They should be flagged at referral and should receive reminders and information on transport
options etc. Contact details should also be checked and up-dated.66
It has also been recommended that following the FSA, a standard form with basic information
should be faxed to the GP regarding the outcome of the consultation (alternatively a phone
call should be made to the GP by the specialist).119
In some UK health boards, GPs receive
feedback on their referrals and the outcomes of these referrals on a monthly basis to support
primary care audit.10
GP notification of outpatient DNAs is also considered important yet
there is evidence that GPs frequently do not receive such notification.66
24hr GP notification of the diagnosis of lung cancer10 203
In the UK, a lung cancer „24
hour GP notification fax policy‟ has been introduced in some regions. Once a patient is
diagnosed with lung cancer a fax is sent to the GP within 24 hours with the diagnosis and
likely treatment plan on it.279
An audit (2008) of this process found that GPs thought it was a
useful, however they wanted more details regarding whether the patient had been informed of
the diagnosis and what information the patient had been given.279
Also the form layout was
too cramped and the fax tended to be of poor qualtity.279
Appointment reminders for patients - Patient reminders for appointments are
recommended to reduce non-attendance,56 66 97
and there is evidence from numerous studies
that reminder systems can reduce DNAs.66
It is recommended that initial appointment letters
be followed by a phone call to ensure receipt of the appointment notification, as a substantial
proportion of DNAs are due to the fact that the patient never received the notification.61 65
In
37
the Commonwealth Fund‟s 2003 National Survey of Physicians and Quality of Care, about
half of the GPs had patient reminder systems, although only one-fifth of these were
automated.97
It is also recommended that cancer-related DNAs are followed up through
aggressive community outreach.52
Patient held records10 12 51 75 95 280 281
Patient held records which are taken to each
appointment and updated by the provider have been used for years in many countries
(particularly for antenatal care). Several benefits have been described, such as readily
available up-to-date information on the patient and their care, improved communication and
coordination between providers with reduced delays (due to information being available when
required), improved communication between the patient and providers and better access to
information for the patient enabling them to identify gaps in their understanding, greater
patient involvement in their own care and increased empowerment.12 75 280 281
Patient held
records seem particularly valuable where multiple institutions or health care providers are
involved, such as in cancer care.282 283
Patient held records are being trialled at Wellington
Blood & Cancer Centre. The results of this trial are expected mid 2009.12
Templates for
patient held information can be found at: www.modern.nhs.uk/cancer/ patient experience
Integrated electronic patient records2 43 201
which provide readily accessible information
to providers. Integrated records avoid duplication, therapeutic errors, and time delays (as they
avoid the necessity to wait for patient information).2 201
Electronic records can be used to
identify and monitor at risk individuals and monitor follow-up.2 Electronic records improve
coordination and continuity of care by improving information flows between health care
providers,2 43 48
and if linked with other databases can be useful as a research and auditing
tool.201
Issues regarding integrated electronic records include the initial set up costs and the
need to ensure compatibility of computer systems, and concerns regarding patient
confidentiality.2 The Central Cancer Network‟s Regional Lung Report
12 identified sub-
optimal information flows, with GP IT systems not being linked to those of the DHB, as
major issues in the lung cancer pathway. 12
Provision of a care plan51 87
to the patient at diagnosis to assist patients and
family/whanau work through the cancer care process. A standard template is recommended.87
The plan should include dates of diagnosis and treatment, details of investigations and
treatment options and side-effects, appointment and follow-up schedule, general
recommendations (diet, activity), and contact details of relevant health professionals.87
It is
suggested that the patient‟s treatment plan be approved at a multidisciplinary team meeting284
and that the patient care plan should be communicated to the primary care provider with
provision of formal transfer of care arrangements if appropriate.48
Communication framework containing details of what to communicate when and how
has been recommended to improve communication across the patient pathway.10
In the UK
the DOCTOR acronym has proved to be a useful tool:10
Diagnosis and prognosis
Options regarding treatment
Care Plan time scale and follow up
Told – what the patient/carer has been told
Other agencies involved/referred to
Review who, where, when
4.2.3 Interventions to facilitate good coordination of services Care coordination means that the care process is managed so that a care plan is developed and
communicated to the relevant parties and that all of the care needed is arranged and delivered
in a timely manner.75
Care co-ordination is considered a key mechanism to improve cancer
care, yet currently care for cancer patients is often fragmented with poor communication,
confusion and delays.285
A systematic review of the literature (1966-2003) by the National
Institute of Clinical Excellence (NICE, UK) on interventions to improve cancer service
configuration indicated that good coordination enables services to complement each other and
38
provide better quality care.75
Such interventions are listed below and examples are provided in
Section Five.
Development of standardised care protocols which may be called optimal care
pathways, patient management frameworks or care maps.62 75 89 90 286
Optimal care pathways
are a tool to improve continuity, coordination, clarity and consistency of the patient journey
and should be developed according to best evidence.62 89
In contrast to clinical practice
guidelines which guide clinical decision making, optimal care pathways guide the patient
journey.8 Development of optimal care pathways involves a clear description of the clinical
pathway, identifying the critical points and describing the key requirements for best practice
at each of the critical points in pathway.8 286
For example: specification of processes for
appropriate communication at the time of referral and diagnosis; processes for timely
investigation (such as pre-clinic CT scans, rapid access clinic, pre-allocation of „slots‟ for
bronchoscopy and CT FNA, prioritised reporting of biopsies); arrangements for
multidisciplinary input and transmission of information, and so on.286
The implementation of
optimal care pathways is linked with provision of a care plan to provide patients and their
family/whanau with clear expectations.90
Optimal care pathways facilitate the appropriate organisation of service delivery to improve
quality8 and have been associated with more rapid referral, diagnosis and treatment, reduced
hospital length of stay, reduced investigation, and greater opportunities to support the
patient.90 286
Patient management frameworks based on best practice are used in Australia to
provide a consistent management approach to cancer across a region; and these frameworks
are being developed by each tumour stream.8
Coordinated streamlined referral and investigation51
Efficient policies and procedures for referral and investigation should be developed. to avoid
time delays and resource wastage through repeating diagnostic tests.48 287
- Streamlined referral processes have been instituted in several countries, including a single
entry route with one point of contact and a single queue for appointments. In the UK, referrals
can be submitted electronically.10 83
Central referral centres have been established in some UK
networks: GPs phone, fax or email the referral and the patient also calls for an appointment;
the patient receives a leaflet giving details of what to expect.10
Not only can GPs refer patients
to a rapid access clinic (see below), but patients can be referred directly from the radiologist if
the CXR is suspicious of lung cancer, thus reducing delay by eliminating the requirement to
go back to the GP for a referral.160
In Canada, centralized referral intake for cancer patients
provides a single entry point to the system („central access system‟);87
a diagnostic assessment
program streamlines investigations and a wait list coordinator provides wait time information
to patients and others.87
- Rapid Access: where patients can access clinical specialists and diagnostic tests, with fast
tracking (prioritisation) of those patients most likely to benefit from reduced times to
treatment78 88
A „one-stop‟ lung cancer clinic is recommended to reduce the time from
referral to diagnosis of lung cancer.51 87
In the UK, rapid access lung cancer clinics have been initiated to expedite assessment of
people with possible lung cancer.160 288 289
Patients with suspected lung cancer can see a
respiratory physician and nurse specialist for a clinical assessment and then have a CT and
bronchoscopy if required. Results are available within 24 hours and they are then discussed at
the next multidisciplinary meeting which is held weekly.86 290 291
A qualitative evaluation of
the „one stop‟ clinic to assess if it was too stressful for patients to have a full day of
assessments and investigations, found that patients were in favour of the „one stop‟ clinic:
95% were very satisfied with the clinic; 89% were happy to have all tests done on the same
day; 9% found it difficult to cope and 7% would have liked a 2 day appointment (89%
disagreed with a 2 day appointment); 11% (especially the elderly) would have liked more pre-
clinical information.291
The conclusion of the evaluation was that with appropriate pre-
clinical information patients did not find the „one-stop‟ clinic too stressful irrespective of age,
39
gender and diagnosis; several hospital visits were avoided and this was of particular
importance to rural patients.291
In Canada, weekly rapid diagnostic assessment clinics for potentially curable lung cancer
patients have been instituted to fast-track decision-making and coordinate treatment for
patients to be managed with curative intent.88
These interventions are described in greater detail in Section 5
- Appointment of navigators or care co-ordinators1 12 48-50 53-55 58 59 75 263
Much international and national literature identified the importance of a seamless cancer
journey and proposed navigators or care co-ordinators as a way of facilitating the journey.1 12
48-50 53-55 59 75 263 Navigators or care-co-ordinators have a complementary role to that of other
health providers working with cancer patients; and their focus is to deal with the barriers and
gaps in care, and to organise and coordinate care to ensure that patients with cancer are linked
to all the necessary health and social resources.12 292
There is a suggestion that care-co-
ordination is particularly important for disadvantaged groups, such as Māori and Pacific
peoples.12
Assisting patients through the cancer journey is believed to empower patients, as it
provides them with an understanding of the various steps involved in the journey and
provides necessary information for decision-making.1
Navigation aims to facilitate the patient journey by linking patients to informational,
emotional and practical support, and by improving the links (ie communication and co-
ordination) between services.285
Navigators were originally described as someone (often a
nurse) to accompany the person with cancer to appointments, provide emotional support and
advocacy.33
Currently navigators or care co-ordinators have no consistent competencies or
role descriptions.12 75
Different types of professionals can be navigators or care co-ordinators
providing different services in different settings.285
Various models of care co-ordination have
been used internationally (some examples are presented in Section 5). Currently there is no
evidence to support the use of any particular model for care coordination.285
In designing a care coordinator role several questions have been proposed in the literature: 75
i) What is the scope of practice and competencies required? For instance the role could be
filled by a specialist oncology nurse, a nurse or other provider. Case managers75 293-295
have
tended to be nurses and they have been used predominantly for patients with complex care
needs to co-ordinate care across settings, provide information and access to support
networks.75 293-295
Specialist oncology nurses (really a sub-set of case managers) have been
used to provide advocacy, information and emotional support, and facilitate care co-
ordination.75 296-300
Patient navigators are not necessarily nurses and have been used
particularly for cancer patients to coordinate appointments, ensure medical records and results
are available for appointments, provide information to patients and link patients to support
services.50 301
In the Hutt Valley and Wairarapa DHB‟s Cancer Journey Project, various types of providers
were listed as being potentially suitable as care-coordinators.51
These were Maōri health
providers, Pacific health providers, primary care provider practice nurse, community health
worker, tumour specific guides (for example, a lung cancer nurse) and Cancer Society
workers.51
The Whanau Ora Cancer Care Coordination and Advocacy Model recommended
both a Māori community-based navigator to act as a resource for health education, to provide
support needs assessment, counselling, advocacy, support, liaison and establishment of a
survivor support network; and a systems navigator to interface with the community, providers
and NGOs, provide liaison between providers, monitor and track Māori DNAs, trouble shoot
issues for complex cases and provide practical information regarding the health and social
care systems.54
ii) Who should receive formal care coordination? Usually case management has been used
for patients with complex health or social needs.298 299 302
The greatest benefits of care
40
coordination have tended to occur for more vulnerable patients (minority and low-income
patients).59 75
iii) When is care coordination required? The optimal timing and duration of care
coordination has not been well defined.75
The period of navigation could begin on referral
with an abnormal finding or alternatively at diagnosis, finishing with completion of the cancer
treatment or perhaps re-commencing on relapse of the cancer.50 119 285 303
It is reported that
most patients experience the highest degree of distress prior to the first consultation with the
specialist, and that emotional support and the provision of appropriate information around the
time of diagnosis is vital for quality cancer care.285
There is also some evidence that care
coordination offers benefits in both the treatment phase and palliative phase.299
iv) How does the care coordinator’s role relate to that of other providers?75
There is likely
to be some role overlap, role conflict and a possibility for duplication and gaps.75
These may
be minimised if the care coordinator is considered to be part of the multidisciplinary team.
Preliminary assessments of care coordinator roles appear generally positive, although there is
a lack of evidence of efficacy of patient navigation in reducing delays to diagnosis and
treatment or improving survival.59
An Australian study indicated that special breast cancer
nurses were effective in providing information, preparing patients for treatment and were
associated with improved team functioning;296
although the results from another Australian
assessment were somewhat variable.304
A UK survey to investigate the role of lung cancer
specialist nurses suggested there had been little previous evaluation of the role, training was
lacking and duties were undefined.305
The survey indicated that there was insufficient capacity
to deal with all the referrals received and the median number of new cases seen (per FTE) was
142 (IQR 117-200) per year.305
There was a wide range of duties performed by the nurses
with most of their work occurring pre-diagnosis; although 50% collected clinical information
for and coordinated the MDM.305
Qualitative US studies on nurse case managers have
indicated better information provision and support, improved symptom control, greater
referral to palliative care and increased patient satisfaction.298-300
Improved adherence to
diagnostic follow-up has been reported;59
and improved breast cancer screening rates have
been achieved in native American women.306 307
A systematic review on the effectiveness of
case management on cancer patient care was unable to draw any conclusions due to the
heterogeneity of the case management interventions and methodological issues.293
Although
available evidence suggests that the appointment of someone to coordinate care most likely
provides benefits for patients and providers, the actual processes of care that contribute to
improved patient outcomes have not been clearly described.75
The literature also comments
that the published studies assessing care co-ordination typically involve structured programs
where the co-ordinator role is well supported, and this may not be the case in all settings.75
It
cautions that whilst care coordinator roles may have enormous potential, careful consideration
should be given to how the role is designed and implemented;75
and development of an
evidence-based framework to clarify the training requirements, competency standards and
scope of practice for care coordinators is recommended.75
Reported barriers to care co-
ordination include inadequate resourcing of the care co-ordination role, lack of access to
structures or services to support the role and inadequate preparation of the navigator or care
coordinator for the role. 75
Setting of target times (eg wait time targets) for critical events within the lung cancer
patient pathway 19 308
Although the link between specific waiting times targets and improved
lung cancer survival remains unclear, there seems little doubt that long waiting times increase
patient and family/whanau anxiety, and reduce community satisfaction with the health care
system.14
Wait time targets for cancer management have been introduced in many countries, including
the UK, Australia and some European countries (some examples of these are provided in
Section 5).8 308 309
In NZ, standards recommended by TSANZ specify that i) patients „referred
by primary care physicians for urgent specialist assessment of suspected lung cancer should
41
be seen within two weeks of referral irrespective of whether they live in rural or urban
regions‟ and ii) „all necessary investigations required to make a therapeutic decision should
have been completed within six weeks of referral regardless where patients live‟.43
Audit of the patient pathway and ongoing monitoring (using performance indicators) to
identify and respond to any delays in the system is strongly recommended in the literature.12
Good information systems and appropriate data use are believed to be important to support
the delivery of high-quality care.97 103
TSANZ has recommended that DHBs should ensure
that adequate records are kept to enable audit, cost analysis, and assessment of service
outcomes.43
Greater efficiency of care through improved communication, collaboration and coordination
requires multifaceted interventions involving combinations of the various interventions listed
above. In the UK over recent years, extensive effort and resources have been devoted to
streamlining the cancer pathway.14
This has involved optimising e-referral, on-line referral
triage, establishing models of „straight to test‟, improving scheduling and sequencing of key
diagnostic tests and appointments and ensuring clear outcomes from multidisciplinary
meetings.14
In Canada, re-organisation of lung cancer services has occurred.88
Links between
primary and secondary care have been established to fast-track referral of patients with
suspected lung cancer, GP education sessions have been held, referral pathways have been
clarified, and a patient-flow coordinator provides the next available consultation with an
appropriate specialist closest to the patient and can book investigations using dedicated
imaging slots.88
There are weekly rapid access clinics for patients with potentially curable
tumours and there are weekly multidisciplinary team meetings and discussion to streamline
and co-ordinate investigation and multimodality treatment.88
Patient care timelines and
clinical management details are entered into an electronic database which is used to assess
outcomes of the initiative.88
These initiatives have substantially reduced the time interval
from presentation to diagnosis.88
These initiatives are further described in Section 5.
4.3 Interventions to improve the safety and effectiveness of care
4.3.1 National clinical guidelines15 42 44 48 129 230 309 310
The development of national frameworks of care and clinical guidelines are considered
important for consistent effective care.48 129
Guidelines reduce inequalities in care as they
minimise the impact of bias and stereotyping.230
Clinical guidelines are used extensively with
the aim of improving and standardising practice.311
Whilst they can be effective in changing
provider practice, whether they do this depends on how they are developed and
implemented.311
Clinicians must be familiar with and use the guidelines for them to be
effective. National NZ guidelines for the referral of people with suspected cancer are about to
be released.42
There is a suggestion in the literature that referral guidelines for suspected lung
cancer have a weak evidence-base being largely drawn from expert opinion.117 187
The
introduction of national UK guidelines (in 2000) has not as yet resulted in improvement in
lung cancer survival.122
However compliance with the guidance in unknown and in one study
only 45% of lung cancer cases took the standard pathway.122
The Southern Cancer Network‟s Lung Cancer Patient Mapping Project recommended the
development of regional referral guidance for the diagnosis and management of lung cancer,
in addition to the formation of a Regional Lung Cancer Tumour Group.48
Any regional
guidelines should conform to the national guidelines for referral of people with suspected
cancer.42
4.3.2 Establishment of a lung cancer working group48
or tumour streams.23
Regional lung cancer tumour streams are currently being developed in NZ, facilitated by the
Regional Cancer Networks. In Australia, the CanNET program, is responsible for facilitating
the development of tumour streams in each state.284
42
4.3.3 Clinical decision support tools2
Decision support tools are being developed to support clinicians in the use of guidelines.
These tools will compare patients characteristics with a knowledge base and then offer
patient- and situation-specific advice to guide the clinician.2
4.3.4 Multidisciplinary care12 75 77 80 81 163 312
Although multidisciplinary care usually occurs after diagnosis it may occur prior to diagnosis
and is therefore included in this review. Early involvement of a multidisciplinary team is
recommended in much of the literature to streamline care by improving communication and
co-ordination.12 75 77 80 81 163 312
Multidisciplinary teams are commonly established around
tumour streams.284
Multidisciplinary care is reported to have the potential to improve
coordination of care and reduce duplication, address therapeutic nihilism, enhance
consistency in decision-making and standardise care (as care is not based on the knowledge or
opinion of one doctor)284
thereby optimising the quality of care.115 172 313
In addition it provides
the opportunity for educating team members, data capture, and the recruitment of patients into
clinical trials.313
The Southern Cancer Network‟s Lung Cancer Patient Mapping Project recommended that all
patients with suspected lung cancer should be discussed at a specialist lung cancer MDM
before treatment starts, that there should be a standardised MDM form for registration and
documentation of the MDM, that all available records should be available at the time of the
MDM, that there should be an electronic referral process between departments to enable fast
tracking of referrals once a decision has been made at the MDM, and that there should be
processes to communicate the decisions made at the MDM to the GP and others.48
It also
recommended that the MDM should support the collection of data to enable auditing of the
management of lung cancer patients.48
The need for an MDM co-ordinator has also been
suggested to ensure information flows into and out of the MDM (ie to ensure that all
necessary information is available at the MDM, that timely reports of the MDM discussion
are received by the GP and others, and that the collection of data for a lung cancer database is
facilitated).12 48 314
A multidisciplinary meeting toolkit has been developed in Australia.315
Whilst international guidelines on the management of lung cancer recommend
multidisciplinary care for all patients with lung cancer, there is limited evidence of the impact
of this on health outcomes. Efficacy of multidisciplinary care may depend upon what is meant
by the term. The term is variably used in the literature and seldom specified. It sometimes
refers to professionals from a wide range of disciplines working together as a team with
clearly defined roles to deliver comprehensive care to the patient, and at other times refers to
care provided predominantly by one medical specialist with discussion at a meeting with
physicians from other specialities..
In France, the multidisciplinary approach for cancer patients is mandated.316
A French study
(2007) carried out a 1-year prospective study on patients discussed during multidisciplinary
weekly meetings, to analyze the concordance between the proposed and administered
treatment, the delay of treatment, and the 1-year survival.316
Results were positive suggesting
that efficacy of management was confirmed, discordant rate were <5% and the time to
treatment following the meeting was 4 weeks (27 days), which was considered acceptable.316
There is also international evidence of improved survival and patient satisfaction in patients
with breast cancer with a multidisciplinary approach to care.1 However, there is currently
fairly limited evidence of the efficacy of multidisciplinary care in lung cancer.1
Multidisciplinary care has been associated with significantly higher active treatment rates for
lung cancer in NZ, Australia and the UK.1 45 115 206
It has been associated with improved
coordination and more rapid diagnosis and treatment.115 160
Results from the National
Multidisciplinary Care Demonstration Project in Australia were positive indicating improved
information, psychosocial support, communication between providers, and patient care.1 Data
from Edinburgh (1995−2002) evaluating redesign of services (that included an increase in
multidisciplinary meetings) for patients with NSCLC, indicated that there was an increase in
the number of patients with stage III or IV disease referred; a six-fold increase in anticancer
43
treatment; and a significant increase (of 6%) in survival over that period.317
Also in the UK,
care by a multidisciplinary team has been associated with improved coordination, greater
patient support and reduced delays to diagnosis and treatment.160
However in the secondary
care lung cancer audit, Timely Access to Oncology Services for People with Lung Cancer in
the Auckland Northland Region, 156
patients discussed at an MDM had longer transit time to
treatment, although this may have been due to the selection of cases discussed at the MDM.
There has been difficulty getting GP involvement in multidisciplinary meetings due to time
and work pressures;1 and in the UK, it was reported that key specialists attended less than
50% of the meetings.121
The report suggested the need to have fewer MDMs, concentrated at
the cancer centres supplemented by teleconferencing from distant sites.115 121
Although
guidelines recommend that all lung cancer patients be discussed at an MDM,15
resource
constraints, such as lack of specialist time, may make this an unrealistic goal.
4.4 Interventions to improve equity and the patient-centredness of services
4.4.1 Interventions to deal with system factors (ie development of more responsive
services) Mainstream services deliver most health care to Māori, Pacific and other ethnic
minority groups and therefore mainstream services (both clinical and support services) 51 55 56
need to be culturally appropriate and provide access to quality care for all.55 204
In addition,
targeted services for specific groups, such as Māori and Pacific, should be further developed
and resourced.318
The literature suggests the following interventions to make services more equitable and
patient-centred. However there was little evidenced based evaluation of these interventions.
Similarly an earlier literature search found little evidence-base.56
A friendly welcoming environment is considered a pre-requisite for improving access to
health care services.60
Tamaki Healthcare Primary Health Organisation’s review of
community based service for Maori in ADHB and CMDHB recommended that clinic and
hospital environments and staff should be more „Māori friendly‟.52
It also suggested that
familiar surroundings, such as whanau rooms, encourage questions to be asked and minimise
whakama.52
Increased consultation time – whilst it may not be possible to schedule longer
appointments with the doctor, a team approach to care may provide greater opportunity for
patients to discuss the information provided and their concerns.
Consultation with and involvement of patients and the community
A common theme in the literature concerns the importance of consulting extensively with
communities to ensure that services are patient-centred and culturally sensitive.105
The main
methods used internationally to do this are: 14 97 101 103 319-321
- Regular surveys of patients to obtain feedback on service performance particularly
relating to services at critical points in the cancer pathway such as at presentation, referral,
during investigation and around the time of diagnosis14 97 101 103 319 320
In some countries,
ongoing, routine patient feedback to a practice is obtained using internet-based patient-
centred care surveys following a patient encounter or episode of care. This feedback is
then used for targeted practice improvement. Such surveys are associated with increased
engagement of the patient and improved satisfaction.97
- Establishing patient advisory groups linked to regional cancer services to provide input
and advice for service planning. Such groups have been instigated in some Canadian
provinces.263
- Consulting with, engaging, and forming partnerships with communities (for example
organisations or groups representing different ethnic groups).56 59 100 101 103 319 321
Collaboration with communities has been reported particularly in relation to health
education programs, raising awareness about local health care services, service planning
and the development of outreach activities.105 319
Although literature on evaluation of the
44
effectiveness of community involvement is limited,56 105
there are indications that barriers
to care for target groups are reduced.56
Inclusion of family/whanau in information sharing and decision-making61 98 100 128
is
considered essential in much of the literature.
Development of links between mainstream services and Māori and Pacific providers to
enhance service responsiveness to and support of Māori and Pacific peoples.318
It is
recommended that mainstream providers especially in rural areas should use Māori/Pacific
health providers to complement existing services and to provide a more holistic approach to
care.128
Provision of culturally appropriate support services51
are important to provide
psychosocial support to patients and their family/whanau throughout the cancer journey. It is
also important to inform people of the services available51 52
and a stocktake of supportive
care services has been suggested.48
The literature identified the GP, other health professionals
(such as the specialist, palliative care nurses, district nurses), the Cancer Society, and
family/whanau as important supports during the lung cancer journey.12 50
Other literature
identified social workers as a key support to link patients and their family/whanau to support
services and resources.51
The need for the clinical team to be adequately supported by allied
health professionals in order to provide a multidisciplinary and holistic approach to patient
care was also mentioned.48 49
It was recommended that the Cancer Society should work
collaboratively with Māori and Pacific providers, to establish culturally appropriate support
programmes for Māori and Pacific cancer patients and their families/whanau.48
In some studies, patients commented on the value of talking with other patients and survivors
of cancer who had been through similar experiences;50 51
and an audio-conferencing network
was suggested for people in rural areas.50
Some on-line social networking sites exist which
claim to link cancer patients, survivors and support services.322
The Access to Cancer Services for Māori Report49
identified a dedicated Māori cancer
support group in Rotorua (Aroha Mai Cancer Support Group), that provides information on
cancer and cancer services to Māori patients and their whänau, raises public awareness of
cancer, and offers emotional support and travel assistance.49
The literature lacked specific details on the support services required or the possible best
practice models of support. Another literature review also found a paucity of literature
relating to community support or possible models of best practice for Māori with lung
cancer.58
Development of a support network involving lung cancer patients, survivors and
family/whanau,55
and provision of information on support groups.169
Organizational supports for cultural competence209
such as adequate resourcing of
ongoing cultural competence training and increasing awareness of the role of the system and
the health workforce in perpetuating inequalities.49 56
Provision of services in locations where people feel comfortable and the participation
of families is welcomed (such as churches, community centres and marae).56 100 171
Delivering
of services away from usual clinical settings may be appropriate for some service provision,
and this appears to be effective in engaging communities.56
In NZ, marae-based services for
Māori, and church-based services for Pacific people have been popular and there is a high
level of satisfaction with these services, although the literature is devoid of any outcomes
evaluation.56
4.4.2 Interventions to deal with provider factors Māori and Pacific workforce development
49 55 56 64 98 101 – A diverse health care
workforce with providers of the same ethnicity and language as the underserved population
was considered essential to improve services to these populations.56 101
For Māori, qualitative
45
reviews emphasized the importance of a whānau ora approach to care and the need for
increased numbers of Māori providers.52 55
Evidence for the effectiveness of diversifying the health care workforce and the value of
ethnic-concordant providers is somewhat contradictory. Most of the literature supports the
concept that trust in and satisfaction with health care services tend to be higher when the
patient and provider have a similar ethnic background, and that increasing the availability of
such providers is an effective way of improving the quality of services. 55 56 152 181 215 225 323
However in a study which video-taped GP consultations,181
although patients were more
satisfied when seen by a physician of the same ethnicity there was no discernable difference
in patient-centred communication.181
There is some literature which suggests that personal
similarity and physicians' communication style (rather than ethnicity per se) are the important
factors determining patients' trust, satisfaction, and compliance,55 323
and that not all patients
want to see an ethnic concordant physician (sometimes for reasons of confidentiality).60 242
It
should be noted that overall, satisfaction with doctors is high in NZ. The Māori Health Chart
Book324
reports that 92% of non-Māori and 91% of Māori were either satisfied or very
satisfied with their GP; and that 95% of Māori were either satisfied or very satisfied with their
Māori health provider.324
Few studies have evaluated health outcomes associated with ethnic concordance of the
provider. Some studies have evaluated outcomes such as improved patient knowledge and
adherence with management, especially relating to mental health services and diabetes
services, and these have found better results with ethnic concordant providers compared with
ethnic discordant providers.56
US research on the association between ethnic concordance and perceived medical errors has
been inconclusive, with several studies showing no difference for ethnic minorities in ethnic
concordant or discordant provider-patient relationships.325
Although one of these studies
indicated that white patients treated by white physicians were less likely to report medical
errors than white patients treated by non-white physicians.325
Whilst direct evidence of improved health outcomes from diversifying the health care
workforce is lacking, it is considered that this is a worthwhile endeavour.326
Community workers or link workers, who are respected people within their
communities but who do not necessarily have any health care training, can facilitate access to
health providers and services.56 129 327
Improving providers’ patient-centred communication skills and good provider-patient
interaction are consistently reported in the literature to be associated increased trust and
satisfaction with care.106 133 204 219 223 231 236 328-331
Important elements of effective communication include: listening appropriately, encouraging
the patient to ask more questions, providing clear information, using simple language,
providing emotional support, being willing to share decision-making, and agreement about
the nature of the problem and the need for appointments.58 123
There is evidence that training
of providers can improve effective communication and is recommended.203
Cultural competence training of providers is considered essential to reduce barriers to
equitable and patient-centred care.47 52 110 118 193 229 314 315
It is necessary for providers to deal
with a wide range of people from different cultures and backgrounds, and any patient should
be able to receive individualised high quality care.229 315 316
Some literature stresses the need
for cultural competence training for all health workers, including receptionists and
administration staff.47 52 91
The receptionist and other administrative staff play a major part in
whether the health care experience is positive or negative and it has been suggested that
training for receptionists is useful to improve their approach to patients.332
Improved cultural competence among health care providers reduces bias and stereotyping and
improves the provider-patient relationship, and has been associated with improved trust,
46
greater patient and provider satisfaction, improved access to care (such as reduced delay in
seeking care and improved utilisation of services) and improved adherence to management.57
The Commonwealth Fund‟s Health care Quality Survey (2001) indicated that differences in
the quality of the provider-patient interaction contributed to ethnic disparities in satisfaction,
but not to ethnic differences in health service utilisation.204 242
However, the authors
acknowledged that decisions regarding surgical treatments could be influenced by the quality
of the provider-patient interaction, as surgical treatment requires a greater level of trust.204 242
Although the need for cultural competency is supported by the literature and there is some
evidence of improved service utilisation and patient satisfaction, it has not been evaluated
with respect to health outcomes, and there is little evidence for best practice models or
approaches, and little evaluation of cost-effectiveness.57 248
However, the Pacific Cultural
Competencies Literature Review report suggests that the focus of provider training should be
on general principles of good interpersonal communication skills and participatory decision-
making styles, rather than on specific cultural competency training.57
The report presents the
BESAFE model which suggests:
- Addressing overt and covert barriers to care.
- Addressing levels of awareness and sensitivity towards minority groups.
- Conducting a cultural assessment.
- Obtaining knowledge about the cultural group.
- Maintain effective clinical encounters.57
Much of the literature relating to Māori cancer patients indicates the importance of knowledge
of tikanga (cultural practices) at a health care workforce level and that observance of tikanga
demonstrates respect and improves communication between the provider and the patient and
their family/whanau.47 51 227
The literature also stresses the great importance for some Māori
and Pacific peoples of including family/whanau in the cancer journey.43 47 58 91 318
4.4.3 Interventions to deal with patient factors The literature suggests that improving communication between the patient and provider and
reducing cultural and other barriers requires a „2-way‟ strategy.204 213
Providers need training
in patient-centred communication and cultural competence and patients need training in how
best to communicate with providers during brief consultations.333
Preparing patients for
consultations has been shown to improve patient participation in their treatment.333
Improving
health literacy and providing patients with information on the services available and how best
to access them is also considered of vital importance.319
A Dutch randomised controlled trial of a double intervention on intercultural communication
which involved training GPs in intercultural communication and educating patients by
providing a videotape on how to communicate with their GP in a direct way, found that these
interventions were successful in improving the quality of care.320
…………………………………
Multifaceted interventions are recommended to improve the quality of cancer care. Successful
strategies reported to improve the quality of cancer care are listed in Table 3.
Table 3: Successful strategies to improve the quality of cancer care
Key strategies successful in improving cancer care 1
• Connecting the different parts of the patient journey.
• Developing the team around the patient‟s journey.
• Making the patient and carer experience of care central to every stage.
• Making sure there is capacity to meet patient needs at every stage.
47
Initiatives must be appropriately resourced, monitored and evaluated. In addition, quality
initiatives should contain incentives to encourage their adoption. Pay-for-performance
programs are reported internationally to be evolving, and some programs measure service
performance according to dimensions of quality, the quality of patient experience, and the
adoption of information technologies103
Examples are provided in Section 5.
Appendix B presents a summarised list of the main interventions recommended in the
literature to improve the quality of care in the relevant section of the lung cancer pathway.
Some relevant practical examples of such interventions are presented in Section 5.
4.5 Implementation of Recommended Interventions 334
The challenge is not only to develop new models of care to address the important priorities
for cancer patients, such as the availability of care, timely management and comprehensive
psychosocial support,205
but also to implement these new models into routine practice.
Numerous factors influence change in clinical practice. Failure to effectively implement
recommended interventions may involve factors at various levels of the health care system.334
For instance, these may include the characteristics of providers and patients; team
functioning; influence of colleagues; organisation of care processes; available time, staff and
resources; policy making and leadership.334
It has been suggested that barriers and incentives to implementation be assessed at six
levels:334
Intervention - practical advantages, feasibility, credibility, accessibility, attractiveness.
Individual professional/provider - awareness, knowledge, attitude, motivation to change,
behaviour routines.
Patient - knowledge, skills, attitudes, compliance.
Social context - opinion of colleagues, culture of the social network, collaboration,
leadership.
Organisational context - organisation of care processes, staff, capacities, resources,
structure.
Economic and political context - financial arrangements, regulations, policies.
Steps recommended for inducing change and the potential barriers and incentives to change at
each step are listed in Table 4.334
The Improving Access to Primary Health Care: An evaluation of 35 reducing inequalities
projects. Overview prepared for the Ministry of Health (2005) report identified several
characteristics associated with successful interventions to improve inequalities:60
- expertise in managing services, knowledge of the health sector, good relationships with
DHBs, links between community service delivery and general practice
- good IT infrastructure
- knowing the target population and identifying their needs
- development of trust and the building of relationships
- working with specific communities and exhibiting an open-minded approach and a
willingness to work with people on their own terms.
48
Table 4: Steps to induce change and potential barriers/incentives
Orientation
• Promote awareness of the intervention
- level of interest
• Stimulate interest and involvement
- degree of contact with colleagues
- understanding of the need for the intervention
Insight
• Create understanding
- knowledge and skills
• Develop insight into own routines
- attitudes (open minded or defensive)
- willingness to acknowledge gaps in performance
Acceptance
• Develop positive attitudes to change and reduce resistance to change
- perception of advantages of change
- opinion of scientific merit of change
- opinion of credibility of innovation source
- degree of involvement in the development process
• Create positive intentions to change
- degree of confidence in ability to change
- perceptions of potential problems of enacting change
Change
• Try out change in practice
- perception of barriers (time, staff, cost)
- opportunity to try on a small scale
• Confirm value of change
- whether first experience is positive or negative
- degree of cooperation of others
- side effects (eg higher or lower costs)
Maintenance
• Integrate new practice into routines
-willingness to redesign processes
• Embed new practice in organisation
- procedures in place for ongoing reminders
- availability of supportive resources
- degree of support from management.
49
Section 5: Examples of Potentially Relevant Interventions
5.1 Examples of interventions to streamline the cancer care pathway
5.1.1 Optimal cancer care pathways and waiting time targets in the UK The UK has developed optimal cancer care pathways with waiting time targets in an attempt
to reduce delays and improve times to diagnosis and treatment for people with cancer (Figure
3). Timed pathways have been put in place for each individual tumour site to ensure that
patients are proactively managed through the 62-day pathway. Initiatives include optimising
e-referral, streamlining referral triage, on-line referral triage, establishing models of straight
to test, ensuring clear outcomes from multi-disciplinary meetings, and improving scheduling
and sequencing of key diagnostic tests and appointments.14
For suspected cancer, the UK has initiated:
- a 2 week wait rule for urgent referrals335
(commenced in 2000)
- a 31 day target from decision to treat to the commencement of treatment336
- a 62 day target from urgent referral to the commencement of treatment336
An initial evaluation of the 2 week wait rule for referrals for lung cancer (2005) reviewed the
medical records of all patients referred with suspected lung cancer for the year prior to
introduction of the 2-week wait and DoH guidelines, and for the subsequent 24 months.335
A
total of 1044 patients were referred, of which 650 (62%) were found to have malignancy. In
the first and second years of the 2-week wait scheme, only 57 and 58% respectively were
referred via the scheme. Department of Health guidelines were followed in all but a small
number of cases. Median wait time was 9 days with 71% seen within 2 weeks. The absolute
number of referrals rose and the proportion having cancer fell from 78% before the scheme to
46% in the second year. During this time, there was no change in stage at presentation. The
most common reasons for referral were cough, dyspnoea, weight loss, haemoptysis and chest
pain. Symptoms were not helpful in discriminating benign from malignant disease and
haemoptysis was actually more common in the benign group. An abnormal chest x-ray
suggestive of lung cancer was the most common referral basis accounting for 87% over the 3-
year period. The finding of a mass was more common in cancer (p<0.0001), but 30% of
benign diagnoses also had a mass on chest x-ray. At the time of this evaluation the 2-week
wait scheme had failed to reduce waiting times for lung cancer. This was partly due to
continued usage of referral routes outside the 2-week wait scheme and also due to a large
increase in referrals, probably generated by the introduction of new guidelines. There were
more referrals and a lower proportion of malignancy. The observed increase in early review
of patients without cancer was however believed to have beneficial effects, such as the
reassurance provided by rapid diagnosis, and also over 50% of the patients without cancer
should have been in a respiratory medicine clinic in any case, irrespective of cancer referral
guidelines.335
Efforts to encourage referrals via the scheme included simplifying the referral
procedures with proforma-based faxed referral letters/electronic referrals.335
Since, wait times
have been reduced. A prospective audit of lung cancer patients at South Manchester
University Hospital (Sept 2003-March 2005; published 2007) indicated that patients had their
FSA within the 2 week recommended time period but that the National Cancer Plan 62 day
recommended time to treatment was not being achieved.337
However, according to the UK
Department of Health in November 2008, 97% of patients were being treated within 2 months
from urgent GP referral to treatment, for all cancers.48
50
Figure 3: Cancer Clinical Pathway (UK) (Adapted from Reference 278 )
Other time targets for lung cancer used in the UK are specified by the British Thoracic
Society (BTS) recommendations (Table 5). 101
Table 5: BTS Recommendations for the Management of Lung Cancer
Referral Patients with clinical evidence suggestive of lung cancer should be seen by a respiratory physician
within:
- 1 week from receipt of a general practitioner (GP) referral or outpatient referral
- 2 weeks from GP X-ray suggesting a high probability of lung cancer
- 2 days following an inpatient referral.
Diagnosis
Results should be conveyed to patient within 2 weeks of the decision for bronchoscopy or cytology.
Treatment Surgery: thoracotomy should be performed within
- 8 weeks of the first respiratory physician consultation
- 4 weeks of acceptance on the surgical waiting list.
Radiation therapy:
- patients should be seen within 1 week from referral receipt
- radiation therapy should commence within
- 2 working days for urgent cases
- 4 weeks for definitive treatment (complex planning)
- 2 weeks for palliative treatment.
Chemotherapy:
- patients should be seen within 1 week from referral receipt
- treatment should begin within 7 working days of decision to use a particular protocol.
Communication
- management decisions should be communicated to GP within 2 days of the treatment
decision.
Further Staging & Assessment & ?MDM
GP Referral for suspected cancer
Diagnostic Phase (eg CT, Bronchoscopy, CTFNA etc)
& MDM
First Specialist Appointment for suspected cancer
Decision to Treat First Definitive Treatment
14 days 31 days
62 days for all cancers from urgent GP referral to treatment
51
Time targets in Australia - The Victorian Patient Management Framework for Lung Cancer
suggests the time from FSA to treatment decision should be no more than four weeks.
Time targets in the Netherlands - The Netherlands Association of Comprehensive Cancer
Centres suggests that eighty percent of patients should be through the diagnostic trajectory
within three weeks. Within five weeks is acceptable if mediastinoscopy is conducted (Dutch
Lung Cancer Study Group 2004).48
Drafted time targets for the Northern Cancer Network (NZ):47
- Time from GP referral to secondary care: 2 weeks
- Time from FSA to MDM: 75% within 4 weeks
- Time from MDM to thoracic surgery: 2 weeks.
- Time from MDM to FSA in medical oncology: 2 weeks.
- Time from MDM to FSA in radiation oncology: 2 weeks.
5.1.2 Radiology pathway (UK 2006)278
The UK radiology pathway (Figure 4) includes the GP request (electronic form, email or fax)
which is received and vetted according to protocols; the appointment is booked and the GP
and patient are notified of appointment; the investigation is performed and reported, and if
abnormal a CT +/- bronchoscopy is booked; the result is faxed to Cancer Services for an
appointment and also sent to the GP; the patient is seen at the „one stop‟ clinic and has any
further diagnostic and staging investigations performed prior to being assessed at the MDM
regarding treatment. All appointments along the pathway are fully booked and coordinated to
reduce the number of outpatient appointments required.
Figure 4: Radiology pathway (UK)
GP Referred CXR - Abnormal
Straight to Test (eg CT scan)
One Stop Clinic
Pooled Radiology Lists
Single Queue for Diagnostic
Radiology
Combined Tests
MDM
Treatment
According to agreed referral, scanning and reporting protocols
Coordinated booking & scheduling - care coordinators - navigators, - nurse specialists
52
Successful implementation of this pathway has occurred in the UK. One example is in
York,338
where re-design of the service was achieved through auditing individual patient
journeys, formal mapping of the process, establishment of a multidisciplinary project team
supported by senior managers, administrators and strong clinical leadership, with monitoring
of the re-designed pathway. Reported outcomes include:
- reduced mean transit times of 11 days with 100% of lung cancer patients meeting the 62 day
target from referral to treatment (previously only 72% met the target) and a reduction in the
average maximum wait time from 103 days to 49 days.
- 42% had a CT scan prior to the first specialist appointment (compared with none previously)
- 73% had a CT scan prior to bronchoscopy (previously 19%)
- 80% of cases requiring both CT and bronchoscopy had both of these prior to the MDM
resulting in the need for fewer MDM discussions.
- the coordination of tests and results being available for appointments reduced the number of
specialist appointments required.338
Straight to Test („Open access‟)
In some UK health boards if the radiologist reporting the CXR suspects a diagnosis of lung
cancer, a direct referral is made to the chest clinic for an appointment within 2 weeks and a
CT scan is arranged, with simultaneous notification to the patient's GP.83
Patients attending
for a CXR are routinely informed that if the result is abnormal they may receive an
appointment and further tests. The automatic referral from radiology to the respiratory clinic
is rapid, but has the disadvantage that patients may wish to discuss the results and referral
with their GP.83 119
The NHS Modernisation Agency reports that this service has resulted in
significantly reduced delay between the CXR and the FSA.10
Evaluation of the „straight to test‟ part of the pathway was also performed in Birmingham.277
Following an abnormal CXR report patients are referred (by either their GP or the radiologist)
to the rapid access clinic and undergo a CT scan. The evaluation indicated that:
- 10% of the CT scans were arranged directly by radiology
- the median wait from CXR to CT scan was 12 days compared with 28 days for cases that
did not have CT scan prior to the clinic appointment.
- the median time from CXR to rapid access clinic appointment was 13 days.
- for those patients with an abnormal CXR suggestive of malignancy there was a „high
probability‟ (40%) of the final diagnosis of malignancy.
The conclusion of the evaluation was that a CT scan prior to the rapid access clinic visit was
appropriate to accelerate the time to treatment.277
5.1.3 Direct GP access to CT scans This is a similar concept to the „straight to test‟ intervention used in the UK and results in the
CT scan being performed prior to the FSA. However, in „straight to test‟, whilst either the GP
or radiologist may refer for a CT scan the intention is that it is the radiologist who refers the
patient, to reduce any delay which would be caused if the patient had to go back to the GP for
the referral. However there is a suggestion that some patients will want to discuss the result
and the referral with their GP prior to proceeding with further investigation and referral. Both
GP and radiology referral pathways are operating in the UK.
Whilst general direct access to CT scans is not available to GPs in NZ, some local initiatives
have enabled direct access.155
A Community-Referred Radiology (CRR) scheme was
introduced in the Wellington region in 2000. Private radiology clinics were funded by Capital
and Coast DHB to carry out radiology procedures (at low or no cost to the patient) for patients
referred by GPs.159
GPs had to comply with clinical pathways and guidelines.155
Requirements
varied such as limitation of direct access to specific patient conditions, specific tests or a
requirement for specialist pre-approval for the test.155
However there were few constraints on
over-referral, little monitoring or auditing of referrals and no feedback to GPs.155
Evaluation
of the scheme339
indicated that access was improved by reduced waiting times, increasing
service accessibility to low-income people, reducing patient-travel time, and decreased
outpatient referrals.339
GPs reported high satisfaction with the service; although the time
53
required to obtain specialist pre-approval was viewed by GPs as a significant barrier to use of
the service.155
Improved direct access of GPs to chest CT scans for possible lung cancer was
considered desirable. It was suggested that such a scheme should be based on guidelines and
there should be guaranteed timelines for performance of the scan.155
It was recommended that
such a scheme should involve upskilling of GPs, the development of explicit communication
channels between primary and secondary care, improved procedures for referral with
coordination of the availability of CT scan results with the FSA, and involvement of the GP
liaison and the lung cancer coordinator in this process.155
5.1.4 Standardised referral templates Examples of standardised referral forms used in the UK are presented in Appendix C.
Some UK cancer networks (eg Merseyside and Cheshire Cancer Networks) provide a
„Primary Care Resource Pack‟ which contains information on lung cancer, guidelines,
pathways, and referral proformas to guide primary care providers. A named individual in each
practice (usually a nurse) has the responsibility of updating any changes to the resource
pack.10
5.1.5 Rapid access lung cancer clinics i) UK Examples of Rapid Access Lung Cancer Clinics in the UK include:
Liverpool: The rapid access lung clinic is an outpatient/day case diagnostic service, which
allows patients to undergo a series of investigations within their first specialist visit. Patients
are seen on average within 7 days from the date of referral. Patients see the respiratory
specialist, lung cancer nurse specialist and have several investigations on the day. An
evaluation of the clinic suggested high levels of patient satisfaction.
Royal Free Hospital (London): An audit of the rapid access clinic at the Royal Free
indicated that use of the service was acceptable: 40% had a mass or nodule (others had
consolidation or pleural effusion etc); 20-30% referred cases had lung cancer; and all referrals
were diagnosed within UK target wait times.288
Birmingham: Patients with clinical or radiological features suspicious of lung cancer are
referred to the rapid access clinic by either a GP or radiologist. After the initial clinical
evaluation by a respiratory physician, appropriate patients are given information about the
lung investigation day (LID) which normally takes place within three working days of the
rapid access clinic.160
There is a dedicated CT list in the morning, a lunchtime
multidisciplinary meeting (with respiratory specialists and radiologists) followed by a
bronchoscopy list in the afternoon or CT FNA the following week.160
Other tests such as
ECG, lung function tests are performed in the morning before the CT scan. Patients in whom
surgery may be appropriate for either treatment or diagnosis are discussed at a full
multidisciplinary meeting, which includes thoracic surgeons, two days later.160
The very frail
and anxious patients are excluded from the LID pathway; cancer specialist nurses support
other patients through the pathway. An example of a patient information leaflet for the rapid
access lung clinic is shown in Appendix D
Audit of the LID indicated that:
- 57% of referred cases had lung cancer
- after instigation of the LID there was a streamlined multidisciplinary care approach
- using staging CT scan as the first definitive investigation reduced the number of
bronchoscopies performed (as some cases went straight to CTFNA or surgery)
- the LID did not incur additional cost as the number of CT scans performed did not increase.
- there was a reduction in the length of the diagnostic pathway
- patient surveys indicated that patient satisfaction levels were high
- introduction of dedicated CT and CT biopsy slots on fixed days and the agreement with
pathologists to fast track the reporting on samples from the LID aided the success of this care
pathway.160
Cambridge: Papworth Hospital „Two Stop‟ investigation and management service312
involved reorganisation of services. Centalised investigation of patients with possible lung
54
cancer from several health districts now occurs at a regional centre. Patients are investigated
according to a set protocol which includes universal CT scanning and surgical review.312
Patients are initially seen in the peripheral clinic by a respiratory physician (or admitted to the
district hospital) and then referred to the regional hospital for investigation. The admission
date (within 10 working days) for bronchoscopy and CTFNA is obtained by a phone call to
the investigation co-ordinator at the regional hospital. The patients are told that they may have
lung cancer. The patient‟s notes and radiology are reviewed at the regional hospital and the
need for other staging investigations is determined. If the peripheral clinic is overbooked,
patients can attend a rapid access clinic at the regional hospital within 10 working days.312
When the patient arrives at the regional hospital for the investigation day, they are seen by a
nurse and then by a specialist nurse who assesses psychological or social problems. The
patient has a chest CT scan which is assessed by the respiratory physician and the radiologist
to determine if a bronchoscopy or a CTFNA is required. If indicated, a bronchoscopy is then
performed and the patient is discharged after four hours. Some patients require alternative
investigations.312
A multidisciplinary integrated care pathway facilitates routine collection of
patient information throughout the investigation day to enable monitoring.312
Three days after the investigation day, all patients are reviewed by the multidisciplinary team
and the need for surgical resection, further staging, histological investigation and pre-
operative assessment is determined and documented. The patients are followed up at a clinic
later that morning or four days later to receive the diagnosis and management plan.312
Following the consultation, the nurse sees the patient to provide further clarification and
support. Patients are given written information on their treatment and contact details. The
patient‟s GP is informed of the diagnosis and management plan either by phone or fax on the
day of the clinic; a typed summary follows within 14 days.312
Evaluation of the service indicated that 18% of referred cases did not have lung cancer. The
median time from presentation at the peripheral clinic to surgical resection was five weeks.
The overall surgical resection rate increased to 25% (which is comparable to rates in Europe
and the USA), indicating that it is possible to increase the resection rate by a „more systematic
approach‟. The authors postulated four possible reasons for the increase in the resection rate:
i) more rapid diagnosis; ii) increased histological confirmation of the diagnosis; iii) CT
staging for every patient and iv) surgical review of every patient.312
ii) Canada87
Canada has established a central access system (CAS) and diagnostic assessment program
(DAP) which are similar in concept to the Rapid Access Clinics in the UK. Entry to the CAS
is via a phoned, emailed or faxed referral. There are pre-defined referral criteria and triage is
performed by the CAS prior to the FSA. There are diagnostic assessment protocols which
allow all clinicians to access protected booking slots for specific procedures and specialist
appointments. This enables more even distribution of cases, facilitates patient flow and
reduces wait times. There is an assessment coordinator who links with patients, primary care
providers, specialists and other stakeholders, and collaborates with the multidisciplinary case
conference teams. Formal linkages with primary care providers are considered essential for
this system to operate effectively. A particular focus is timely bi-directional communication
throughout the patient pathway. GPs are supported by various tools including service plans
and guidelines which provide criteria for the referral of patients. Transition protocols from the
diagnostic assessment program to the multidisciplinary team are clearly identified and include
accountabilities and communication strategies.87
Re-modelling of cancer services in Canada
has resulted in substantially reduced wait times for specialist assessment, radiotherapy and
surgery.88
Urgent cases are often seen within 48 hours and the time interval from a suspicious
CXR to diagnosis has been reduced from 128 days to 30 days.88
Patient and staff satisfaction
levels are being assessed and specific information resources for patients are currently being
developed.88
55
5.1.6 Lung cancer care coordinators or patient navigators i) Canada
Several navigator models exist in different provinces: 285
- Active co-ordination model: usually a nursing role which involves making appointments,
completing and transmitting forms, contacting potential referral sources and physicians, and
providing information and educational material to patients.285
- Facilitator model: usually either a professionally or volunteer led role involving greater
emphasis on educating and informing the patient and assisting with decision-making, with
less involvement in the direct co-ordination of services. 285
- Shared model: less clearly formulated role with several people providing navigation.
Navigators have been assessed by patient satisfaction and some qualitative or anecdotal data
exists, however there is little evidence available by which to identify a best practice
approach.285
An assessment of patient navigators in Canada found that: 285
• There was no evidence to support the use of one navigator model over another, although
with the shared model the patients were more likely to „fall through the cracks‟ than in the
other models.
• Important aspects of the role irrespective of the specific model used included:
- Provision of timely information and emotional support
- Individualisation of service interventions, enhancement of patient self-
efficacy and provision of psychosocial support
• Core navigator skills and activities included:
- Knowledge of the disease pathway and prognosis
- Identification of the patient‟s knowledge of the pathway and disease
- Knowledge of relevant services and resources and good communication
between navigators and health care providers
- Identification of patient‟s environment and support systems
- Identification of information and support gaps
- Provision of information and linking the patient with resources.
An important part of the navigator role was considered to be preparing the patient for
subsequent events and allowing them to talk through their diagnosis and concerns in a caring
environment. „Patient preparedness‟ was identified as a need by patients as they wanted an
understanding of the sequence of likely events and outcomes and also by physicians who felt
that patients were commonly overwhelmed with the diagnosis and the volume of information
provided
• Critical intervention points identified for contact with the patient (either in person or by
phone) included:
- Diagnosis
- to offer support regarding the impact of receiving a cancer diagnosis
- to prepare the patient for consultations and further investigations
- to provide information resources to assist with decision-making
- to provide practical information and assistance with access to
financial, transport and community and other support.
- Prior to treatment
- Immediately following treatment.
The usual contact per patient was between 2-4 face-to-face contacts of 30-90 minutes duration
and possibly associated with 2-3 short telephone or email exchanges. 285
• Reported barriers to navigation285
- Limited resources
- Work overload and burn out of the co-ordinator.285
ii) Australia In Australia cancer care coordinators have been appointed in several states as a strategy to
improve the cancer journey.75
To support its Cancer Clinical Service Framework, the NSW
Health Department plans to recruit ~50 cancer nurse coordinators to support oncology team
56
meetings, provide a direct source of contact for patients and primary care physicians
accessing cancer services75
The Australian Lung Foundation specified the role of the Lung
Cancer Nurse Coordinator as: 340
- being readily available to the patient and their family and the multidisciplinary team
- providing emotional and social support to patient and their family
- providing information on the cancer journey, and diagnosis and treatment options
- facilitating continuity of care and flow of timely information between multidisciplinary team
members and to the patient.340
iii) USA
In the US, navigation roles include arranging financial support, scheduling transport to
appointments; organizing childcare during appointments, co-ordinating care among providers
and ensuring medical records and results are available at appointments, arranging interpreter
services and ensuring the patient and their family are linked with the appropriate support
services.303
The National Cancer Institute is conducting a Patient Navigation Research
Program at multiple sites to assess the impact of patient navigators on timely quality care.303
In some areas of the United States, patient navigators called Native Sisters have been
instrumental in working with indigenous peoples in relation to identifying, recruiting and
accompanying people to cancer screening; providing patient education on cancer risk; co-
ordinating diagnostic tests; providing follow-up and referral services; arranging for child care,
transportation and counselling if needed; and, providing advocacy including mentoring people
to ask questions during the consultation.306 307
5.2 Information resources
5.2.1 Lung cancer patient information pathways An example of the information resources provided to lung cancer patients in the UK is
presented in Table 6.
Table 6: Lung Cancer Patient Information Pathway341 (www.sussexcancer.nhs.uk)
Referral Investigations Diagnosis Treatment Surgery
2 Week Wait Leaflet
Appointment Letter
OPD explanation (to include
suggestion that patient brings
companion)
map, transport/parking details
Chest X-ray (verbal)
Blood Tests (verbal)
CT Guided Biopsy
CT Scan
MRI Scan
Having a Bronchoscopy
PET CT Scan
MDT Leaflet
Network Contact Details
Contact numbers for national lung
disease charities
Cancerbackup Contact Card
Cancerbackup publications:
Chemotherapy – A guide for patients
and families.
Radiotherapy – A guide for patients and
their families.
Patient Held Record
Useful Websites for Lung Patients
Generic Information Pathway
Information for People with
Information re: referral to Guys &
St Thomas‟ Trust for surgery
(verbal)
Thoracic Nurse Specialist Card
Patient Information Series no. 80 –
Minor Chest Surgery
Patient Information Series no. 81 –
Lung Surgery
Professional assessment of individual patients will often identify other information needs.
Chemotherapy Radiotherapy Surgery After treatment/Follow-up pack:
Chemotherapy – A guide for
patients and their families
(Cancerbackup-
www.cancerbackup.org.uk)
Cancerbackup Drug Information
leaflets (to be replaced by in-house
information)
Chemotherapy Information
Pathway
Radiotherapy – A guide
for patients and their
families
(Cancerbackup)
Advice to patients
having a course of
Radiotherapy to the
Chest SCC
Radiotherapy
Information Pathway
Surgical information (Guys) more than
just appointment time and instruction to
phone on the day
Lung Surgery
Minor Chest Surgery
What to expect following surgery
GSTT
Post-op follow-up contact/call GSTT
Communication Pathway
Information on who/where to go for
support/help – District Nurse referral
Post-Operative Information on Drain
Care (GSTT)
Patient Support and Information
Network
Referral to Community Macmillan
Team
Appointment/Care Plan
Hospice Services
Breathing clinic (Martlets Hospice)
57
In Canada, the importance of phased provision of information to avoid overload has been
stressed.285
5.2.2 Internet resources Numerous general internet sites provide information on lung cancer. Some of these provide
doctor-approved information and some do not, so accuracy and reliability of the information
is uncertain. An official UK internet site (http://www.cancerbackup.org.uk/Cancertype
/Lung/Resourcessupport/PatientInformationGuide) provides a listing of information resources
available in the UK for cancer patients and their families; and provides links to resources
giving general information on cancer, its treatments and effects. It also provides links to
support groups and others with cancer as well as links to other support services.
Similarly, the National Cancer Institute in the USA provides online resources including an
online booklet on „What you need to know about lung cancer‟ which provides information on
lung cancer symptoms, diagnosis, treatment and questions to ask the doctor
(http://www.cancer.gov/cancertopics/types/lung). This site also provides links to general
cancer resources including „support and resources‟, information on „clinical trials‟ and
„complementary and alternative medicine‟. Several online support groups for lung cancer are
available (eg CancerCare: http://supportgroups.cancercare.org/ and the American Cancer
Society‟s Cancer Survivors network: http://csn.cancer.org/?msgrid=4).
General information on lung cancer is available on the Australian Cancer Society website
(http://www.cancercouncil.com.au/canceranswers/) and the Victorian Cancer Society has a
booklet „Lung Cancer‟.
The NZ Cancer Society has an online booklet (52 pages) on „Understanding Cancer – Lung
Cancer‟ which was adapted from the Victorian booklet and provides some information about
diagnosis, treatment, support and the emotional impact of cancer. This booklet is available at:
http://www.cancernz.org.nz/Uploads/ Understanding_Cancer_Lung.pdf In the booklet there
are few contact details for support services other than the phone number for support services
staff at the Cancer Society, the phone number for Work and Income for financial assistance,
and a recommendation to contact the hospital social worker or district nursing service
regarding home help. There are no contact details for support groups or other resources.
5.3 Care Packages Care packages are an initiative in mental health in NZ and a similar concept could potentially
be of benefit to lung cancer patients also. Once the patient is assessed by a co-ordinator, they
are able to assess certain funded services, such as a certain number of talking therapy
sessions, CAM, social support including transport, and extended consultations with GP or
practice nurse. However the extension of this scheme to cancer patients may be limited by the
cost.342
5.4 Interventions specifically for Māori and Pacific Māori providers with a Māori worldview provide practical support to Māori cancer patients
and they provide a conduit between the patient and the health system.20
Some examples
mentioned in the literature of specific interventions include:
A Māori/Pacific Nursing service in a mainstream PHO (Mornington PHO in Dunedin).343
This service is reported to have helped develop a trusting relationship with effective
communication between GPs, other staff and Māori and Pacific patients and their whanau.
This service is not specifically for cancer however and particularly involves immunisation,
screening, diabetes care, and smoking cessation.343
The Māori/Pacific nursing role is an
outreach service with flexible hours of work that are tailored to meet the health needs of the
whanau/family. Clients come to the service by referral from clinic staff, whanau or other
health and social providers. Initial contact occurs within two days and focuses on building a
rapport and establishing priorities.343
The service works in partnership with Māori providers
and other health and social agencies providing whanau ora, tamariki ora, disease state
management, healthy lifestyle promotion, smoking cessation, family violence and wellbeing,
58
budget advice and food bank. 343
The nurse often facilitates attendance at appointments and
accompanies clients as a support person.343
Ngati Ruanui Health Tahua Iwi is an Iwi owned health service with low fees and
transport assistance. An increase in utilisation of services and reduced DNAs have been
reported with this service.60
Te Puna Hauora is an urban Māori provider on the North Shore in Auckland which offers
consultations at reduced fees.60
Ozanam House is an example of a mainstream organisation reported to work for Māori. It
is a residential facility in Palmerston North for cancer patients and whānau from the Central
Districts region who are using the Regional Cancer Treatment Service. It has been found to be
very useful.55
Aroha Mai Cancer Support Group - a dedicated Māori cancer support group in Rotorua
run by volunteers that provides information on cancer and cancer services to Māori patients
and their whänau, raises public awareness of cancer, and offers emotional support and travel
assistance.49
The Hunga Manaaki hospital-based cancer support pilot program in Rotorua commenced
at the end of 2007 with the aim of providing support to cancer patients and their whanau post-
diagnosis and of increasing the uptake of cancer treatment services. Hospital-based workers
provide support throughout the hospital stay and the linked community-based team of
community workers provide support following discharge from hospital.44
PHO-led community based patient navigator cancer support services – there is one on the
West Coast and one in Auckland (funded by the Ministry of Health) which aim to improve
cancer service uptake among Māori.44
Examples of successful partnerships between Pacific mental health services and a Pacific
traditional healer include the following: 57
- Pacificare, a non-government organisation, has a traditional healer employed or
contracted to provide services to service users within Pacificare who request it
- Lotofale Pacific Nations Mental Health Services (Auckland DHB) facilitate
community support workers to assist Pacific service users to access traditional healers57
An evaluation of 35 reducing inequalities projects (not specifically related to cancer care)
in NZ showed that since the introduction of the additional funding:60
- The proportion of Māori or Pacific patients using the services did not increase, although
consultation rates in these projects increased.
- ED attendances increased (although it was unknown if utilisation was appropriate or not).
- Outpatient attendance patterns seemed to suggest improved access to appropriate
services.
- Admission rates for ambulatory sensitive conditions did not change.
- DNA rates showed no improvement overall.
5.5 Pay-for-performance packages In the UK, a pay-for-performance scheme based on meeting targets for quality care was
introduced in 2004.344
GPs receive up to 30% of their income as bonuses for reaching quality
targets.97
Bonuses are calculated using a points system based on clinical performance
measures of quality, patient surveys and whether action has been taken to improve care
following patient feedback (for instance if patients complain that it takes too long to get an
appointment, then a system of same-day appointments could be initiated).97
To date two
evaluations of the scheme have been performed. One evaluation of this scheme assessed care
for three conditions (asthma, diabetes and coronary heart disease) at two time points prior to
introduction of the scheme and at two time points following introduction.344
It evaluated
clinical care, continuity of care, patient‟s perceptions of access to care and interpersonal
aspects of care. Its overall findings indicated modest quality improvement with some
unintended reductions in quality for aspects of care not linked to incentives.344
Although the
scheme initially improved quality in the short term (improvement reached a plateau 1 year
after introduction), once targets were reached, quality improvement slowed, and the quality of
care declined for aspects of care not linked to the incentives.344
Also continuity of care
59
decreased with introduction of the scheme; possibly because rewards were linked to rapid
access to a doctor, not to a particular doctor, and also the size of practices increased and many
introduced nurse-led clinics.344
The authors offered several possible explanations for the
plateau effect of improvement: i) the maximum score levels had been attained however this
was generally not the case as achievement was high for only a few indicators (such as
smoking status recorded for 98% of patients); ii) once initial gains had been made subsequent
gains were more difficult; iii) the structure of the pay-for-performance scheme did not reward
further improvement once the targets had been attained; iv) GPs had sufficient income and
little motivation to improve performance and income further.344
The authors favoured the
third explanation that near maximal payments for quality had already been achieved.344
Subsequently the maximum achievable thresholds were raised and some new indicators were
added.344 345
The other evaluation of the pay-for-performance scheme examined the pattern of
socioeconomic inequalities in care quality in the first 3 years of the scheme.345
Although
median levels of reported achievement improved for all deprivation quintiles, practices from
the more deprived quintiles generally improved at the fastest rates.345
Inequalities in the
quality of care decreased following the introduction of the scheme; however it was not known
if inequalities could have widened for aspects of care not subject to incentives.345
In the US, practices are paid a fixed monthly fee for a package of patient-centred services
(such as e-mail visits, reminders, electronic medical records, and demonstrating easy access to
care when needed by the patient) to offset the additional time, information technology, staff
and office costs that would be required to deliver these services.97
60
Section 6: Best Practice Standards
Best practice standards for lung cancer are largely based on the rationale that surgical
resection of the tumour in a patient with early stage disease affords the best chance of cure for
lung cancer.1 2
346
Therefore improvement in health outcomes and survival rates for lung
cancer requires that people present early enough in the natural history of the disease and that
health care services are sufficiently well organised and coordinated to progress the patient
along the cancer journey from presentation to diagnosis and treatment in an efficient and
timely manner.190
Delays to diagnosis may reduce the proportion of patients identified early
enough in the disease pathway to be managed curatively4-6
and delays to treatment may result
in potentially curable tumours at the time of diagnosis, being rendered incurable due to
tumour growth during the delay.163
Some examples of best practice standards for the relevant section of lung cancer clinical
pathway that have been developed internationally are outlined below.
6.1 Best practice standards for the management of lung cancer In the UK, the NHS Modernisation Agency has produced a guide to good practice for cancer
in primary care and the NHS Quality Improvement Scotland has developed clinical standards
for the management of lung cancer. Similarly, standards for coordinated cancer care from
referral to definitive diagnosis have been developed in Canada.87
In NZ, it has been
recommended that Tikanga and Whanau Ora should be written into all best practice
guidelines relating to cancer management.52
Best practice standards have been proposed for:
Co-ordination of care
i) UK
• Objective: To ensure a consistent approach to the delivery of cancer care by identifying
and monitoring those patients with a cancer diagnosis; developing communication
mechanisms to promote clinical continuity and coordination of patient care and working
collaboratively with other providers to deliver patient care which is based on patient need. 10 21
Standard: A structured network for delivery of care incorporating the following: 10 21
- a regional clinical network for lung cancer
- a named lead clinician
- access of patients to a nurse specialist
- defined partnership links between primary care, secondary care, nursing and the
community
- processes for reviewing performance.
Audit: Prospective audit is considered an integral part of lung cancer management
and includes the following: 10 21
- all primary care practices should maintain a register of all patients with a diagnosis of
lung cancer
- reporting of case-mix
- recording of TNM staging (target >90%)
- recording of performance status (target >90%)
ii) Canada
• Objective: To develop evidence-based practices for lung cancer management.263
Standard:
- multidisciplinary groups of experts working together to develop best care practices
- standardised care pathways for evaluation of patients suspected of having lung
cancer160
• Objective: To ensure that an environment of patient-centred care is established. 87
Standard: 87
61
- patients have equal access to high-quality diagnostic care regardless of where they
live in the province
- patients have a diagnosis of cancer made or ruled out in a timely fashion.
- patients are supported throughout the diagnostic process.
• Objective: To ensure that indicators of quality are established and monitored to evaluate
performance outcomes.87
iii) Australia
• Objective: To ensure effective communication and coordination between service
providers.85
Standard: 85
- GPs are involved at all relevant stages of care
- systems are established that ensure efficient and effective processes. For example:
appointment scheduling, availability of investigations for appointments and meetings,
communication processes, and referral protocols.
- roles and responsibilities for communicating within and between teams are clearly
defined and agreed by the multidisciplinary team.
- timely communication of relevant information occurs between service providers. This
may include information regarding investigations, diagnosis, management plan,
contact details, advice relayed to the patient, relevant referrals etc.
- all newly diagnosed patients cancer are discussed in at least one multidisciplinary
team meeting
- patients receive written individualised information about their ongoing care.347
Specialist referral
i) UK
• Objective: To have systems in place within primary care to facilitate appropriate
assessment and onward referral for those patients with symptoms that may suggest
cancer; to provide information to the patient on why they are referred; and have feedback
from secondary care to enable the audit of the quality and process of referral and
communication with the patient as appropriate.10
Standard: Referral guidelines and care pathways agreed by primary & secondary care
should be used for patients with suspected lung cancer. These should include:10 21
- formal written arrangements for referrals (ie which patients should be referred and
when). Referral arrangements should include the option of electronic referral to avoid
postal delay.
- arrangements to ensure that a respiratory specialist sees 90% of patients within 2
weeks of the first referral with a suspicion of lung cancer.
- formal written arrangements for working within MDTs such that:
- all patients with a diagnosis of lung cancer are discussed by MDT within 4 weeks of
referral
- all patients who require it have a tissue diagnosis and non-surgical staging
(including PET) completed prior to the MDM.10 21
The UK self assessment proforma for assessment of prompt referral for suspected cancer is
presented in Appendix E.
ii) Canada
• Objective: To ensure that a coordinated referral and follow-up system is established87
Investigations
i) UK:
• Objective: All patients with suspected lung cancer should have timely and appropriate
investigations to confirm a diagnosis of lung cancer.21
Standard:21
- there are locally agreed written investigation protocols.
- all patients referred with a CXR suspicious of lung cancer have a chest CT available
at the FSA.
62
- >75% of lung cancer patients to have histological/cytological confirmation of
diagnosis.
- information about the patient‟s diagnosis and their understanding of the diagnosis is
communicated to the GP within 2 working days of communicating the diagnosis to
the patient.
Standards for treatment and follow-up are beyond the scope of the present project and are not
included here but are available in the literature.
6.2 Best practice standards for supportive care
Guidance for Improving Supportive Care for Adults with Cancer in New Zealand is expected
to be launched shortly by the Ministry of Health.44
In addition to receiving best possible
treatment, cancer patients want to be well informed about treatment options and available
support, participate in decision making and have high quality communication with providers
who are sensitive to their needs and those of their family/whanau.44
Objectives for supportive care include the following:44
• Objective: To improve the coordination and consistency of support across geographic
areas and cross-sectional engagement of cancer support at a regional level.44
Standard: 44
- Support care service model should be developed.
- Regional cancer networks should promote the use of the support guidance by all
cancer service providers.
- Directory of regional cancer support services should be developed and posted on
appropriate websites (DHB, Cancer Society and other relevant sites).
- Development of collaborative links within and across DHBs.
- Efficient information transfer systems to ensure timely information flows between
providers.
- Key workers, such as patient navigators, Māori/Pacific health advisors, should
provide a single point of contact to guide and support the patient and facilitate a
seamless interface between hospital and support service settings.
- Coordination within multidisciplinary teams and between the hospital-based
multidisciplinary team and the relevant support services with agreements on
responsibilities for agency-specific assessments, referral procedures and information
sharing should be formalised.
- Evaluation of social support services should be undertaken.
• Objective: To provide consistent access to a range of high quality information about
available services and options:44
- all people with cancer should have access to high quality information when needed
and this information should be in format appropriate to their understanding.
- cancer information resources should be relevant to the needs of Māori and other
ethnic groups.
- providers should be familiar with the information resources available and who to
refer patients to for advice regarding financial and other assistance.
- providers should ensure that patients understand the information provided and that
appropriate interpreters are used whenever necessary.
Standard: cancer information should be:44
- easily understood, written in everyday language and take account of the culture and
literacy levels of the intended audience (being developed in various languages and
tailored to different ethnic groups).
- written information should be used as an adjunct to verbal advice.
- accurate, unbiased, balanced and based on best available evidence.
- reviewed by consumers, relevant health care professionals and appropriate cultural
advisors.
- regularly reviewed and updated.
63
- accessible to all - should be available free of charge at appropriate and convenient
locations. Policies should be developed at the DHB and Cancer Network levels to
establish what information should be available at what points along the cancer
pathway.
Regional social support service directories should be developed and circulated. The
directories should be posted on the DHB website, the Cancer Society and other relevant
websites.269
Best practice for health literacy is presented in Section 6.3.
• Objective: To develop and use holistic assessment models to identify the support needs of
the patient and their family/whanau throughout the cancer service pathway.44
Standard: 44
- Develop and routinely utilise social support needs assessment tools at each critical
point along the cancer service pathway. The assessment tools should cover the
domains of personal care, social support relationships, domestic environment support
needs (eg assistance with household chores), childcare, employment, transportation to
and from cancer-related appointments, and income-related costs. Spiritual needs
should also be considered and acknowledged.
• Objective: To provide training for providers to assist them to meet the supportive needs of
cancer patients and their family/whanau.44
Standard: 44
- DHBs and community social support providers should establish systems to assess the
training needs of relevant providers including support workers.
- Communication skills training programs including inter-cultural communication
skills training should be available to all frontline staff working with people with
cancer.
• Objective: To engage local people directly affected by cancer in the development of
cancer services in their region. 44
Standard: Consumers and service providers to be involved at all stages of the resource
development process. 44
• Objective: To actively promote support services that help cancer patient self manage the
effects of cancer. 44
Standard: 44
- Psycho-spiritual support should be available as part of an integrated cancer service.
- Cancer patients with significant levels of psychological distress should be offered
prompt referral for psychological assessment and management.
6.3 Best practice standards for health literacy Recommendations in the literature for best practice in health literacy include:
- identify the audience348
- consider culture and different ways of thinking and knowing348
- choose a clear communication objective348
and reduce the content to what patients
really needs to know.152
- use simple language (avoid medical jargon) and easy-to-read written information 348
- include interactive instructions by making patients demonstrate their understanding.
- use audiovisual aids to supplement oral and written instructions152
- for written information consider the organization and test readability.348
Write
materials at a sixth-grade reading level or lower.152
- pre-test materials to evaluate whether they are suitable for the intended audience.152
National guidelines for the development of health care information are provided by the
Ministry Health (National Guideline for Health Education Resource Development in New
Zealand, 2002).269
64
Section 7: Key Performance Indicators (KPIs)
Performance measurement is a key tool in the process of improving the delivery of health
services349
Quantifying performance allows the monitoring of change, identifies potential
problems, and enables timely corrective action.349
The first step is to define performance by
stating objectives, and hence the basis on which performance will be measured.
Performance measurement requires objectives to be translated into measurable results or
targets.349
These targets should conform to the acronym SMART (ie they should be specific,
measurable, achievable, relevant, and timed) and should be agreed by the relevant
stakeholders.349
Care should be taken in setting targets as „gaming‟ may occur to ensure the
achievement of the target.350
Several types of gaming have been described: i) the „ratchet
effect‟ which may occur if a target is set as an incremental increase above current
performance, as performance may be deliberately restricted to provide a low base-line; ii) the
„threshold effect‟ which may occur if a uniform output target is applied, as there is no
incentive for excellence and top performers may reduce their performance to the level
required by the target; and iii) „hitting the target and missing the point effect‟ which involves
manipulation of the results and output distortion.350
Key performance indicators (KPIs) facilitate the measuring and monitoring of clinical
performance to provide accountability and to identify opportunities for ongoing
improvement.351
KPIs are not the same as targets. Whereas targets describe a desirable end
state, KPIs are the means by which progress towards the desirable state can be assessed (ie
KPIs measure the extent to which set targets are achieved).351
Such indicators must be
feasible, being measurable in a variety of settings and collected as part of routine clinical
practice, meaningful and clinical relevant, scientifically sound, generalisable being
comparable between organisations, and interpretable.85 352 353
Indicators should include
different perspectives, such as those of patients, providers, and planners/funders.354
They
should be embedded in a process and culture of continuous quality improvement.354
Common
barriers to the use of KPIs are lack of appropriate data and lack of stakeholder commitment.
7.1 Types of Key Performance Indicators Performance indicators may be categorised as:
i) Sentinel events indicators which identify a single occurrence. An adverse sentinel event
is an occurrence leading to injury or risk of injury (for example, referrals „lost‟ in the
system or missed diagnoses).351
ii) Rate-based indicators which monitor events over a specified period of time and measure
the proportion of occurrences in relation to the total population at risk.
Performance indicators may be focused on structure, process or outcomes:
i) Structural indicators measure aspects of practice organisation such as personnel,
finances, and availability of outreach services, availability of appointments and so on.355
ii) Process indicators351
answer the question: „are we doing the right things?‟ In order for
process indicators to be valid they should have previously been shown to have resulted in
a better outcome („outcome validated‟).351
In determining which process indicators to use,
consideration should be given to:
- What are the key steps in the process that contribute to the desired outcomes.
- Which critical points should be monitored and how can these be measured.
Examples of process indicators include:
Time intervals 87
- Time from primary care referral to first specialist appointment
- Time from FSA to cancer diagnosis
It should be realised however that times are also influenced by patient factors and are
therefore not necessarily a reflection of health system quality.356
65
Quality of care 87
- Proportion of lung cancer cases receiving the appropriate referral and diagnostic
work-up according to evidence-based guidelines, service plans or protocols.
- Proportion of cases presenting via ED. The proportion of ED presentations is
considered an indicator of access for the most deprived, and therefore is an indicator
of inequalities.
- Proportion of cases referred to the respiratory service.
- Proportion of cases with a histological diagnosis of lung cancer.
- Proportion of non-English first language patients who are provided with an interpreter
at the FSA.
- Proportion of patients using the patent navigator, lung cancer coordinator etc.
- Proportion of cases with a chest CT performed prior to the FSA.
- Proportion of cases discussed at an MDM.
- Proportion of cases for whom all relevant letters and results are available at the FSA.
- Proportion of patients given the lung cancer information pack.
- Proportion of staff that has attended Tikanga best practice and Pacific cultural
competency training programmes (an indicator of culturally competent care).
iii) Outcomes indicators351
answer the question: „are we doing the right things well?‟
Outcomes can be described by the five D‟s – death, disease, discomfort, disability,
dissatisfaction.351
Examples of common outcomes indicators include:87 351
- Patient satisfaction: patient satisfaction with services is an indicator of service
responsiveness to the patient and their whanau/family. It is necessary to determine
what aspects of satisfaction should be measured and how these aspects can best be
measured.
- Tumour stage at diagnosis.
- Survival outcomes.
Health outcomes are commonly more difficult to measure than process outcomes, as they are
usually long-term measures. Also, in addition to being influenced by health system
performance, health outcomes are influenced by factors beyond the control of the health
system,.349 351 354
KPIs therefore often focus on the assessment of short-term process measures,
over which the health system exerts control.354
Although process measures act as surrogates
for health outcomes, they are valuable in their own right as patients are interested in the way
they are treated by the health system, independent of health outcomes.
Development of indicators may be non-systematic, being based on available data and clinical
events (for example: referral rates to specialist services), or systematic using evidence or
consensus expert opinion.355
Development of indicators involves the following steps:352
- Consideration of which actions are available to improve the quality of care.
- Overview of the evidence.
- Consensus about evidence and practice.
- Selection of standards and indicators.
- Measurement specification: definition of standards and indicators; identification of
the target population; adjustment for case-mix; identification of data sources;
clarification of data collection processes and who is responsible for what.
- Pilot testing.
7.2 Examples of KPIs
7.2.1 UK and Australian KPIs for lung cancer The KPIs used in the UK and Australia for monitoring lung cancer care are presented in
Appendix F. However these relate to the entire lung cancer pathway and not only to the
section of the pathway from presentation to diagnosis. In addition, the UK uses wait time
indicators for all cancers including lung cancer as previously discussed. These wait time
66
targets are 14 days from referral to FSA; 31 days from referral to DTT; and 62 days from
referral to commencement of anticancer treatment.278
7.2.2 KPIs for NSCLC used in the Netherlands The Dutch systematically developed key performance indicators for NSCLC using the Rand-
modified-Delphi procedure.354
Recommendations were extracted from national guidelines
(Non-small cell lung cancer: staging and treatment) and a national panel of professionals and
representatives of the National Patient Organisation scored all recommendations. This was
followed by a consensus meeting of professionals. Finally, eight of the 83 original
recommendations were selected by the expert panel, which resulted in 15 indicators. The
indicators relevant to the lung cancer pathway from presentation to diagnosis were:354
Indicators of organisational quality
Proportions of lung cancer cases:
- with diagnostic investigations (chest CT, bronchoscopy, PET) completed within 21
days from the FSA.
- proportion of lung cancer cases discussed at an MDM.
Patient oriented quality
Proportion of lung cancer cases surveyed reporting that:
- attention had been paid to physical symptoms: pain, shortness of breath, nausea,
fatigue, weight loss and insomnia.
- they were asked about psychosocial stress factors and psychological symptoms.
- they were asked about psychosocial problems in family and problems at work.
- if they needed psychosocial care they received it from trained providers.
- they were informed about the existence of the lung cancer nurse/coordinator.
- they received adequate information.354
7.2.3 KPIs for patient-centred care in the Netherlands Following on from the development of performance indicators for lung cancer care, quality
indicators for patient-centred care were developed and validated.357
Patient centredness is
considered to be an important aspect of high-quality integrated care and in order to be
improved, it should be assessed with a valid set of indicators.357
Eight domains of patient-
centred care were identified: access; follow-up; communication and respect; patient and
family involvement in decision-making and care; information; coordination; physical support;
emotional and psychosocial support.357
Examples of indicators developed to assess these
domains are presented in Table 7.
7.2.4 UK audit tool for the lung cancer pathway A multipurpose tool has been developed in the UK to enable auditing of key performance
indicators relevant to the care of lung cancer patients, and also to enable clinicians to monitor
the progress of their patients through the lung cancer care pathway.358
The tool consists of 12
forms which become part of the clinical records.358
Each form fits on a single computer
screen.358
GPs are faxed copies of the forms for their records.358
The 12 forms comprise:
- Referral form which includes the date the patient first became aware of symptoms, the
date they presented to GP and the date that the form was received.
- FSA form which includes all investigations ordered and/or performed.
- Investigations form which includes the dates that bookings were made, the dates all
investigations were performed, reasons why a bronchoscopy was not performed.
- Additional pre-treatment outpatient appointments form.
- MDM form which records the date of the MDM and a report of the meeting.
- Treatment forms (4) which include a separate form for surgery, chemotherapy,
radiotherapy, and supportive care.
- Follow-up form which includes the dates of all follow-up appointments.
- Additional treatment form (eg palliative care).
- Death or discharge form.
67
Table 7: Examples of key performance indicators to used to assess patient-
centred care (Netherlands)357
1. Access
Percentage of patients:
- receiving all necessary diagnostic procedures within 21 days after the first visit to the specialist.
- starting treatment within 35 days after the first visit to the specialist. 2. Follow-up
Percentage of patients that:
- know when to contact the primary care doctor or specialist.
3. Communication and respect
Percentage of patients reporting that:
- the doctor showed interest in them as a person.
4. Patient and family involvement
Percentage of patients reporting that:
- nurses involved family and friends.
- specialists involved family and friends.
- specialists shared decision making with the patient.
- family and friends had opportunities to ask the specialists questions.
- family and friends had opportunities to ask the nurses questions.
- they had opportunities to ask questions. 5. Information
Percentage of patients reporting that:
- they received the relevant information.
- they received the relevant written information.
- they received clear answers from the specialists. 6. Coordination
Coordination: specialists
Percentage of patients reporting that:
- specialists involved knew patient‟s history.
- they knew how to reach specialists.
- they knew about being discussed in a multidisciplinary team of specialists.
- specialist involved took care of the coordination.
Coordination: specialised nurse(s)
Percentage of patients reporting that:
- oncology nurse was present during bad news consultation.
- they knew of the existence of an oncology nurse.
- they knew how to reach oncology nurse.
7. Physical support
Percentage of patients reporting that:
- they got support to control physical complaints.
8. Emotional and psychosocial support
Percentage of patients reporting that:
- they were offered contact with a companion in distress.
- they were asked whether they had psychological complaints.
- they were asked whether they had problems with living conditions.
- specialist asked them about fear and mental state.
68
Concluding remark
Numerous barriers to optimal lung cancer care exist at multiple levels within the health
system and may involve structural, provider and patient factors. Such barriers are well
documented, both internationally and nationally. The current project focuses not so much on
the barriers themselves, but rather on the solutions to these barriers. Numerous solutions to
barriers to optimal cancer care have been recommended in the literature, and many of these
have been implemented internationally. However, outcomes evaluation is generally lacking
and the evidence-base for many of the recommended interventions is relatively weak.
Throughout the course of the project, the relevance and appropriateness of interventions to the
local NZ context will be assessed, using findings from the other components of the project. A
best practice assessment framework will be developed and used to prioritise possible
interventions for local implementation. Key performance indicators will be developed to
monitor service change. Practical recommendations for service change will be developed,
costed and refined to produce a final package of recommended interventions to improve
cancer care from presentation to diagnosis, for people with possible lung cancer and their
family/whanau.
It is intended that the final recommendation package will be implemented locally, and
adapted for implementation in other regions in NZ. Implementation is a challenge that
requires willingness and commitment to change at all levels within the health service, and
cannot be successfully achieved without commitment from all stakeholders, including
patients, their family/whanau and the wider community.
69
Abbreviations
ADHB Auckland District Health Board
BTS British Thoracic Society
CMDHB Counties Manukau District Health Board
CT Computerised Tomography
CT FNA CT Fine Needle Aspirate
CXR Chest X-ray
DHB District Health Board
DNA Did Not Attend (appointments or investigations)
DTT Decision to Treat
EAG Expert Advisory Group
ED Emergency Department
ETHC East Tamaki Health care
FSA First Specialist Assessment
FTE Full Time Equivalent
GP General Practitioner
HRC Health and Research Council of NZ
ICD International Classification of Diseases Codes
IT Inequalities Team
KPIs Key Performance Indicators
MDM Multidisciplinary meeting
MDT Multidisciplinary team
NSCLC Non-small Cell Lung Cancer
NZ New Zealand
NZGG New Zealand Guidelines Group
PET Positron Emission Tomography
PHO Primary Health Organisations
PMF Patient Management Frameworks (optimal care pathways)
PNA ProCare Network Auckland
PNM ProCare Network Manukau
SRU Survey Research Unit
THO Total Health care Otara
TSANZ Thoracic Society of Australia and New Zealand
UK United Kingdom
UoA University of Auckland
US United States of America
70
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Appendix A
Quality Assessment Framework (Hogg) 22
Another useful model for assessing best practice is Watson‟s results based accountability
framework (Canada).93
This model links resource inputs to activities performed, services
delivered, and outcomes achieved and identifies the domains requiring monitoring, evaluation
and reporting.93
92
In the results-based accountability model aspects to identify include:
Context:
Social political, legislative, economic and physical environment
Characteristics of the population
Public participation
Inputs:
Fiscal & material resources: - Physical facilities and equipment
- Educational and training facilities
- Research evidence re effectiveness
- Information and technological resources
Human resources: - Number, mix and characteristics of workforce
(knowledge/competence, orientation toward teams and interdisciplinary
practice, degree of innovation)
Activities (the primary link in the chain through which outcomes are achieved)
Policy, planning, governance: - Funding, remuneration, enrolment, regulation (scope of practice),
professional and clinical governance, info systems, privacy legislation etc
Health care management: - Size, location and type of group practices
- Temporal availability of services,
- Range and comprehensiveness of services (eg counselling services, sports
medicine, walk-in clinics, urgent care clinics, other services)
- Information systems
- Quality improvement initiatives – provider profiling, program evaluation
- Type and availability of decision-support tools for providers (reminder
systems, evidence-based decision tools) and decision aids for patients.
Clinical activities - Extent of evidence-based decision-making
- Engagement in continuing education
- Degree of specialisation in types of patients
- Types of services provided(eg counselling, house calls)
- Models of team based service delivery (eg multidisciplinary care)
- Workload preferences and practice styles (eg recall of patients)
Outputs Service volume
Service type - Referral, prevention/health promotion, curative, palliative, supportive
- Patient-focused, family-centred and/or community-oriented.
Qualities of the services - Responsiveness (the degree to which services align with the expectations and
preferences of patients and providers in terms of timeliness, convenience, and
geographic availability, cultural and social appropriateness.
- Comprehensiveness and whole-person care
- Continuous care/longitudinality (relationships/information/medical care)
- Interpersonal effectiveness (communication and orientation to patient-centred
care, decision-making, interpersonal style)
- Technical effectiveness (provider competence in counselling, tests, treatment)
Outcomes Immediate - Direct outcomes under control of health system eg increased knowledge re
health/health care (health literacy), reduced risk and effects of health
problems and maintenance/improvement working life of providers
Intermediate - Indirect outcomes also influenced by external factors
Appropriateness of provider and place - delivering the right service to the
right person by the right provider in the right place at the right time
Efficiency - achieving the desired results with optimal use of resources
Equit y- care on the basis of relative need
Acceptability – satisfaction with services received and confidence in services.
Final - Influenced to a large extent by factors beyond the control of the health system
Sustainable and accountable health system
Improved level and distribution of pop health and wellness.
Another Canadian Model of attributes and their operational definitions – these were derived
by expert consensus (Delphi rounds) for the purpose of measuring quality5
93
Structural dimensions Clinical information management: The adequacy of methods and systems to capture, update, retrieve, and monitor
patient data in a timely, pertinent, and confidential manner
Multidisciplinary team: Practitioners from various health disciplines collaborate in providing ongoing
health care
Quality improvement process: The institutionalization of policies and procedures that provide feedback about
structures and practices and that lead to improvements in clinical quality of care
and provide assurance of safety
System integration: The extent to which the health care unit organization has established and maintains
linkages with other parts of the health care and social service system to facilitate
transfer of care and coordinate concurrent care between different health care
organizations
Clinical practice dimensions Accessibility: The ease with which a person can obtain needed care (including advice and
support) from the practitioner of choice within a time frame appropriate to the
urgency of the problem
The way primary health care resources are organized to accommodate a wide range
of patients‟ abilities to contact health care clinicians and reach health care services.
(The organization of characteristics such as telephone services, flexible
appointment systems, hours of operation, and walk-in periods)
Comprehensiveness: The provision, either directly or indirectly, of a full range of services to meet
patients‟ health care needs. This includes health promotion, prevention, diagnosis
and treatment of common conditions, referral to other clinicians, management of
chronic conditions, rehabilitation, palliative care and social services
Continuity: Informational - the extent to which information about past care is used to make
current care appropriate to the patient
Management - The delivery of services by different clinicians in a timely and
complementary manner such that care is connected and coherent
Technical quality of clinical care: The degree to which clinical procedures reflect current research evidence and/or
meet commonly accepted standards for technical content or skill.
Person-oriented dimensions Advocacy: The extent to which clinicians represent the best interests of individual patients and
patient groups in matters of health (including broad determinants) and health care
Continuity-relational: A therapeutic relationship between a patient and one or more clinicians that spans
various health care events and results in accumulated knowledge of the patient and
care consistent with the patient‟s needs
Cultural sensitivity: The extent to which a clinician integrates cultural considerations into
communication, assessment, diagnosis, and treatment planning
Family-centred care: The extent to which the clinician considers the family (in all its expressions) and
understands its influence on a person‟s health and engages it as a partner in
ongoing health care
Interpersonal communication: The ability of the clinician to elicit and understand patient concerns, explain health
care issues, and engage in shared decision making, if desired
Respectfulness: The extent to which health professionals and support staff meet users‟ expectations
about interpersonal treatment, demonstrate respect for the dignity of patients, and
provide adequate privacy
Whole-person care: The extent to which a clinician considers the physical, emotional, and social
aspects of a patient‟s health and considers the community context in their care
Community-oriented dimensions Client/community participation: The involvement of clients and community members in decisions regarding the
structure of the practice and services provided (eg, advisory committees,
community governance)
Equity: The extent to which access to health care and quality services are provided on the
basis of health needs, with-out systematic differences on the basis of individual or
social characteristics
Intersectoral team: The extent to which the primary care clinician collaborates with practitioners from
nonhealth sectors in providing services that influence health
Population orientation: The extent to which primary care clinicians assess and respond to the health needs
of the population they serve.
94
System performance Accountability: The extent to which the responsibilities of professionals and governance structures
are defined, their performance is monitored, and appropriate information on results is
made available to stakeholders
Availability: The fit between the number and type of human and physical resources and the volume
and types of care required by the population served in a defined period of time
Efficiency/productivity: Achieving the desired results with the most cost-effective use of resources
In NZ, The Services to Improve Access (SIA) Board of Partnership Health Canterbury
359
suggested the below attributes of best practice services aiming to improve access.
Best practice services should be:
Evidenced-based:
Equitable:
Patient centred:
Empowering:
Health care should be based on the best clinical evidence within
the limits of available resources.359
Equity of access to quality health services should exist according
to need and ability to benefit; and irrespective of ability to pay
Patients should be placed at the centre of service delivery
Patients and their whanau/families should be empowered to
actively participate in and manage their own health care
The World Health Organisation (WHO) has defined eight domains of health service
responsiveness: 360
- autonomy
- choice
- communication
- confidentiality
- dignity
- prompt attention
- quality of basic amenities
- support (access to family and community support)
95
Appendix B
Summary of the Main Interventions to Improve
Quality Care Recommended in the Literature
Recommended interventions under some control of the health system Patient Information
To reduce barriers to:
- accessibility of care
- equitable care
- patient-centred care
Public education (largely outside the scope of this project) Measures to improve public awareness of the warning signs of lung cancer
Information on the services available and how best to access these services
Correction of misinformation regarding lung cancer, especially relating to its treatment
and prognosis
General information for lung cancer patients
Information on lung cancer, investigations, treatment, side-effects, prognosis
Information on the lung cancer pathway (ie what to expect when)
Practical information on services, facilities, parking
Directory of mainstream and Māori services
Information on the support services available
– practical support such as transport/accommodation
– psychological/emotional support services
Information on CAM, traditional practices
Specific information relating to the individual patient
Wait times – certainty of how long the wait will be for appointments and investigations
Care plan
Hand held records
Contacts – who to contact for various problems or concerns
Availability of professional interpreter services
Decision aids to assist patient decision-making
Training of patients in how best to communicate with providers during consultations
Note: Information should be appropriate and should be provided at appropriate times
in the pathway by appropriate means (ie simple language (no jargon); available in
different languages and in different formats (verbal and written information); some
information resources should be designed specifically for Māori and Pacific patients so
as to incorporate their world view)
Re-organisation of
service delivery
To reduce barriers to:
- accessible timely care
- efficient care
- equitable care
- patient-centred care
More flexible appointments (walk-in clinics; appropriate appointment times for rural
patients; after-hours services/arrangements)
Opportunity for longer discussions (longer appointment times or greater team
involvement in care)
Regional provision of cancer services with development of tumour streams and
optimal care pathways
Local service provision - rural outreach services in conjunction with local communities
(specialist clinics; nursing/support services); services within the community in familiar
settings (marae-based; in churches etc).
Navigators/lung cancer coordinators (specification of the coordinator role required)
Fewer visits & more rapid transit
– direct referral from radiology to the specialist
– prioritisation of cases to be fast-tracked
– dedicated slots for investigations
– reporting time targets for reporting of results
– coordinated investigation and assessment (eg CT pre-FSA; improved
scheduling and sequencing of key diagnostic tests and appointments to ensure
results are available for appointments, and all records available for
appointments)
– GP direct access to CT scans
– one-stop specialist assessment and investigation
– MDM to coordinate management (specification of MDM model required)
Continued over page
96
Re-organisation of
service delivery
(continued)
Improved communication
– standardised referral form/template
– central referral centre with tracking of referrals
– acknowledgement of referral with appointment date
– appointment reminder letters
– notification to GP of DNAs
– feedback to GPs post FSA/diagnosis
Consultation and engagement of communities – partnership programs
Partnerships between mainstream and Māori providers
Organisational support for cultural competence training
Auditing and monitoring of the care pathway – transit times, reporting times etc
Regular surveys of patients to obtain feedback on service performance Improved
communication
To reduce barriers to:
- accessible timely care
- efficient care
Telephone & email access to providers
Telephone help-lines and after hours triage
Dedicated phone lines for GPs to contact specialists
Tele-consultations (between patient and providers; between providers)
Integrated electronic records with links to other databases for audit
E-referral; receipt of results and other notification such as GP notification of diagnosis
and care plan by email/fax Care standardisation
To reduce barriers to:
- safe & effective care
- equitable care
National clinical guidelines
Optimal care pathways or management frameworks (development of standard care
protocols by tumour streams eg referral & discharge protocols, clinical agreements re
investigations & treatment etc)
Decision support tools & risk assessment tools
Information resources on available support services Māori Pacific Services
To reduce barriers to:
- equitable care
- patient-centred care
Māori & Pacific workforce development
Increased funding of Māori & Pacific providers & services
Targeted services for Māori & Pacific
Cultural competence
To reduce barriers to:
- equitable care
- patient-centred care
Improved mainstream services - improving cultural acceptability of health care and
support services
Training for providers and staff in communication skills and cultural competence
Inclusion of family/whanau in decision-making and cancer pathway
Acceptance of Māori view point and incorporation of traditional practices
Patient support
To reduce barriers to:
- accessible timely care
- equitable care
- patient-centred care
Financial support
Financial support for travel/accommodation (vouchers taxis/petrol or subsidized
services) with acceptable claiming mechanisms for the financial assistance.
Direct provision of transport/accommodation
Information to patients and providers on the travel/accommodation assistance available
and how best to access it.
Information support - see above under patient information
Emotional support - access to counselling and other support services (such as
patient/survivor networks)
Family/whanau support
To reduce barriers to:
- equitable care
- patient-centred care
Financial support (eg reimbursement for supportive activities; assistance with
travel/accommodation)
Information support relating to:
– lung cancer
– the cancer pathway
– practical information – facilities, services, parking
– support services – practical support (eg transport) and psychological support
Emotional support - access to counselling and other support services
97
Appendix C
Examples of UK Referral Forms
1) Specimen NHS Referral Template (http://www.dh.gov.uk/en/Health care/Cancer/DH_4066671)
Blankshire Cancer Network: Suspected Lung Cancer Referral Form
To make a referral, FAX this form to the Urgent Referral Team at the relevant hospital. If you wish to send an accompanying letter, please do so
Please tick corresponding box for which hospital referred to:
Hospital A: fax: tel:
Hospital C: fax: tel:
Hospital E: fax: tel:
Hospital B: fax: tel:
Hospital D: fax: tel:
Hospital F: fax: tel:
From: (use practice stamp if available): Address:…………………………………………… ……………………………………………………… ………………………………………………………….. Post code: …….…………………………………….. Date of Referral: ………../………/………
GP’s name: …………………………………………. P.C.G. code:……………………......... Tel no: ………………………….......... Fax no. …………………………………
Patient Details: Name: …………………………………………………. Address:……………………………………………… ………………………………………………………… ………………………………………………………. Post code: ……………………………………………. Has the patient previously visited this hospital? Y / N Interpreter required? Y / N
D.O.B: ……/ ……../ …… Age: …… Gender: m/ f Tel no (home): ………………………… Tel no (work): ………………………… New NHS No:……………………… Hospital No. (if known): …………….. First language: ………………………
Referral information (please 4 boxes):
History: Current or ex-smoker? Yes No
History of COPD? Yes No
Clinical examination: Chest signs Yes No Signs of SVCO Yes No Cervical LNS Yes No Stridor Yes No Signs of metastases Yes No Finger clubbing Yes No
Symptoms: Haemoptysis? None Once More than1
Unexplained or persistent (> 3 weeks) cough Yes No breathlessness Yes No wheeze Yes No chest/shoulder pain Yes No weight loss Yes No hoarseness Yes No
Chest X-ray
Not done Abnormal, suspicious of cancer
Abnormal, follow-up recommended Abnormal, other________________________ Date___________________________________
Comments/other reasons for urgent referral: To be completed by the Data Team: Date received: _________ Date 1st appointment booked:_________ Date of 1st appointment: _____________ Date 1st seen: _________ Specify reason if not seen at 1st appointment offered:………… Final diagnosis: Malignant / Benign: (please underline)
Comments about this form and/or additional copies, phone: , fax:
98
2) Example of an actual form (http://www.homerton.nhs.uk/uploaded_files/GP_information/lung_13_suspected_cancer_referral.pdf)
LUNG Suspected Cancer Referral (2 Week Wait Referral)
Please FAX within 24 hours to Cancer Referrals Office: 020 8510 7832 Section 1 PATIENT INFORMATION (Please complete in BLOCK CAPITALS)
SURNAME Date of Referral / /
Date of Birth / /
FIRST NAME NHS number
UBRN - -
Miss Mrs Ms Mr Other:_________ M [ ] F [ ] Home Tel.
Address
Post Code
Mobile/Daytime Tel.
Transport Y N Interpreter Y N
Language
Ethnicity
Section 2 PRACTICE INFORMATION (Please use practice stamp if available)
Referring GP Locum Y N
Practice Address Post Code
Telephone
Fax
Section 3 CLINICAL INFORMATION (please TICK all applicable entries) Please enclose print outs of CURRENT medications and PAST MEDICAL HISTORY
Criteria for Urgent referral [ ] Smokers or ex-smokers aged > 40 years with persistent haemoptysis
[ ] Chest X-ray suggestive of lung cancer [ ] Normal CXR but high suspicion lung cancer [ ] History of asbestos exposure and recent onset
of chest pain, shortness of breath or unexplained systemic symptoms where a CXR indicates pleural effusion, pleural mass or any suspicious lung pathology
Indications for urgent chest x-ray prior to urgent referral [ ] Haemoptysis No. of episodes: _________ Unexplained or persistent ( > 3 weeks): [ ] Chest and/or shoulder pain [ ] Dyspnoea [ ] Weight loss [ ] Chest signs [ ] Hoarseness [ ] Finger clubbing [ ] Cervical or supraclavicular [ ] Cough lymphadenopathy [ ] features suggestive of metastasis from a lung cancer (e.g. secondaries in the brain, bone, liver, skin) [ ] Underlying chronic respiratory problems with unexplained changes in existing symptoms
If Signs of SVCO or Stridor consider immediate referral
N.B. A CHEST X- RAY REPORT MUST BE ATTACHED WHERE INDICATED Unless exceptional circumstances apply (please explain):
INVESTIGATIONS [ ] CHEST X-RAY PERFORMED Date : / / Done at:___________________ Results/Comments:
Medical History and Known Allergies Medication
Discussed urgent suspected cancer referral with patient: Y N Discussed with the patient that they may be asked to attend an appropriate investigation prior to or at their first appt: Y N
Comments/other reasons for suspecting cancer
Hospital use only: (Tick where appropriate) Date Appointment Booked: / / Date of Referral receipt: / /
Target Dates 2ww / / Database: � Patient confirmed: � 62/7 / /
LOCAL CONTACT DETAILS
If you wish to discuss any clinical issues concerning this referral please contact: Dr ………….. Consultant Chest Physician ……………………… If you wish to discuss any other aspect of this referral please contact the Cancer Referral Office on ………………………
99
CRITERIA FOR URGENT SUSPECTED CANCER REFERRAL*
Risk factors
The following patients have a high risk of developing lung cancer:
o all current or ex-smokers o patients with chronic obstructive pulmonary disease o people who have been exposed to asbestos
An urgent referral for a chest X-ray or to a specialist can be considered sooner in these patients. Secondaries may also produce:
o pain in the ribs, back, arm (brachial neuritis in Pancoast tumour), o headache (with or without vomiting fits and limb weakness), o superior vena caval obstruction.
Liver secondaries can produce jaundice or an enlarged liver.
* Based on Referral Guidelines for Suspected Cancer (NICE, 2005)
Notes in grey refer to the evidence grading used in the NICE guidelines, for more information see www.nice.org.uk/cg027NICEguideline
Investigations Referral for diagnostic chest X-ray • Most patients with intrathoracic tumours have an abnormal x-ray. • PLEASE ARRANGE AN X-RAY BEFORE REFERRING. • Many patients will present late, or with signs on an x-ray taken for other reasons. Patients will need an urgent chest x ray if they present with any of the symptoms or signs of underlying cancer mentioned in this proforma and guideline, and also if they have any underlying chronic respiratory problems with unexplained changes in existing symptoms. If there are x-ray features of lung cancer including: o slowly resolving consolidation o pleural effusion o pleural mass Then the patient should be referred urgently If the x-ray is normal, but the suspicion of cancer is slight, please speak to a chest physician for more guidance. Please note that a two-week appointment will not be issued and you will be contacted by the Cancer Referral Office unless: a) the x-ray report is faxed together with this form b) x-ray is normal, but high suspicion of lung cancer
c) Smokers or ex-smokers aged > 40 years with persistent haemoptysis d) Other circumstances apply ~ specify on proforma
100
Appendix D
Rapid Access Lung Clinic - Patient Information Leaflet This leaflet has been written to provide information about the Rapid Access Lung clinic at this hospital.
We hope it answers some of your questions or concerns.
Language If English is not your first language, we can arrange an interpreter to be present at your
appointment. To arrange this please telephone our secretary on Tel 600 1468.
What is the Rapid Access Lung clinic? People who attend the Rapid Access Lung clinic are referred
by their GP or hospital doctor. The clinic aims to promptly investigate symptoms related to your chest.
You may have had a recent x-ray which recommended the need for further tests.
The clinic is organised so that a number of tests can be done during the day, to reduce the number of
times that you have to attend the hospital.
Which Doctor will I see at the clinic? The clinic is staffed by two Consultant Chest Physicians (Dr
Ledson and Dr Smyth) and a team of Specialist Registrar doctors.
How long will I be at the hospital? You should expect to be at the hospital for most of the day.
Can someone come with me? Yes, you are welcome to bring a relative or friend with you on the day.
Where is it held? Your first appointment with the Rapid Access Lung clinic is held on the Day Ward.
Subsequent appointments are held in the hospital‟s Outpatient Department,
How do I prepare? You may have your usual breakfast before 8am on the morning of your first
appointment. You can continue to drink water after this time but should not have anything else to eat
until you have been seen by the Doctor. You should take any medication as usual. If you are Diabetic
you should have your usual breakfast and medication before 8am. If you take Metformin you should
not take this on the morning of the procedure. Please inform the nurse who is looking after you on the
day ward that you are Diabetic. If you are taking Warfarin or other anticoagulant medication please
contact our secretary on 0151 600 1468 as soon as possible, as you may need to stop taking the
Warfarin a few days before attending the clinic.
What do I bring with me? All of your medication in their original boxes or a list of your medication.
For your privacy you may bring with you a dressing gown, for when you are required to change into a
hospital gown, whilst undergoing some tests. We would advise you to leave any valuables (jewellery
and money) at home, as the Trust can not provide secure storage for these items.
What happens at the clinic? You will meet with a Doctor (Chest physician) who will discuss with
your symptoms and any x- ray‟s that you may have recently had done. The consultant will discuss with
you some tests to help diagnose or rule out certain medical conditions. Please feel able to ask further
questions to help you understand the situation. The nursing staff on the Day Ward will also discuss
with you any concerns that you may have and may suggest asking other hospital staff to meet you e.g.
dietician, social worker. You will also meet one of our Lung Nurse Specialists who will provide
information and advice about your attendance at the hospital. This nurse specialises in conditions
relating to the lungs and can discuss any questions that you may have. If you are experiencing
symptoms that are affecting your normal daily activities, they will discuss these with you and may
suggest ways to alleviate these. You may like to prepare some questions in advance. Please use the
space below;
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
What tests/investigations will I have? There are a number of tests that we arrange for you on your
first appointment with us, and are listed below. Although these tests are very useful in gaining
information about you, chest (lung) conditions can be complex to diagnose and further tests may be
required on another day. This will be discussed with you at your next appointment.
ECG (electrocardiogram or heart tracing) – records the rhythm and electrical activity of your heart.
Breathing tests – breathing tests help determine lung function and volume. They are an indicator as to
how well your lungs are working.
CT scan (computer Tomography or CAT scan) – is a specialised type of x-ray that produces highly
detailed and accurate images of inside your body. Patients sometimes worry that this scan will be “like
going in a tunnel” and claustrophobic, but actually it is not. We describe the machine as “a big polo
mint” so your head is never enclosed. Your consultant may also recommend that you have the
following:
Bronchoscopy – A bronchoscopy is a short investigation that allows a doctor to examine your
windpipe and some areas of your lungs by passing a flexible tube (a bronchoscope) down your throat.
It is performed under a local anaesthetic and sedation. For further written information about this
procedure please ask the ward staff for the leaflet „Having a Bronchoscopy under a local anaesthetic‟.
101
This investigation may be done during the afternoon of your first attendance.
What are the benefits of having the tests? The tests will help your consultant to diagnose or rule out certain lung conditions. The results of the
tests may help to determine the best treatment options if appropriate.
Are there any alternatives? This depends on your symptoms and condition. Your doctor will discuss alternative tests with you if
appropriate.
Will there be further tests? Investigating lung conditions can be complex, so it may be necessary for further tests to be organised.
If this is necessary the need for these tests will be discussed with you at your next appointment.
Can I drive to and from the hospital? We would advise you not to drive to the hospital, due to the tests that you will have done on the day.
Ideally we suggest that you arrange for someone to bring and collect you from the hospital. Relatives
or friends that you arrange to collect you can contact the day ward staff on 0151 600 1413 to check on
the day, what time you will be ready to leave.
If you require hospital transport (ambulance) on medical grounds, this can be arranged by your GP
receptionist.
When can I resume normal activities? Nurses on the ward will inform you when you are able to eat and drink following the tests. Usually this
will be 1-2 hours afterwards. Once you have had something to eat and drink you should be able to go
home. You will be given a discharge information sheet.
Although you may not be aware of it, sedation can remain in your system for up to 24 hours and can
cause you to be less alert then normal. It is important that you do not drive, drink alcohol, operate
machinery or sign legally binding documents within 24 hours of having sedation. It would be advisable
to be escorted home and have someone stay with you overnight.
When do I get the results of my tests? You will be given the details of your follow up clinic appointment, which is usually 1 week later and is
held in the outpatients department. At this appointment, the consultant will discuss the results of the
tests that you have had and whether you require any treatment or if further tests are recommended.
Further tests are commonly required to enable the Doctor to make a clear diagnosis and will be fully
discussed with you.
Who do I contact if I have any medical problems after I go home? If you require medical advice following your appointment, you can either contact the day ward on Tel
600 1413 or your own GP service.
Is there anyone I can contact before my appointment to answer my questions?
Yes, if you have any questions or concerns about your attendance at the hospital, you contact our lung
nurse specialist on Tel 600 1182 (Monday – Friday, 8am – 4pm)
Your views
We are continually looking to improve the services that we provide. To do this we welcome the views
of our patients and their families/friends. If you have an suggestions (however small it may seem)
please tell us, by either asking to see our lung clinical nurse specialist whilst you are at the Centre or
write to her. Alternatively on the Day Ward there are leaflets available entitled „Listening and
Learning‟ that asks for your comments as to how your experience at the Centre could be improved.
We carry out formal surveys (questionnaires) to gain your opinion on the service. The results of which
are very important as they enable us to develop the services we provide to suit the needs of the patient.
Your medical records and Information Please find enclosed a booklet entitled “In Confidence”, which explains how the hospital uses
information about yourself. Also you have the right to receive a copy of the letter that your hospital
consultant will send to the doctor who referred you to this clinic. Should you wish to have a copy of
these letters please ask for the leaflet entitled “Letters about me”.
Research at The Cardiothoracic Centre In order to develop and improve our services and treatments for patients, the Trust participates in a
range of research and audit projects. During your attendance at the hospital you may be approached by
a member of staff, who will discuss with you participating in one of these projects. However you are
under no obligation and your care will not be affected if you decide not to participate.
‘No Smoking’ Policy Please note that the hospital now operates a „no smoking‟ policy. This applies to the hospital building
and site. We can offer support to anyone who wishes to stop smoking. Please contact Trish Jones,
Smoking Cessation Advisor on 0151 228 1616 or speak to your GP.
For further information visit www.ctc.nhs.uk
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Appendix E
UK Assessment Proforma
Guidelines for Primary Care Trusts
Measure
Guideline
met?
Yes/No
Reason
not met Action
to be
taken
Referral
GPs have access to and use referral
guidelines and local cancer directories to
refer patients with suspected cancer to
the appropriate local cancer centres and
units
Referral guidelines readily
accessible
Local cancer network directories
which are dated and readily
accessible
System for updating guidelines
and directories in place.
Patients referred urgently for
assessment have the reason for this
explained to them, either by the GP or
another member of the primary care team
Record within patient notes at
point of referral the reason given
to the patient.
GPs regularly review and audit their
referral practice and ensure that they
keep up to date with issues related to the
diagnosis of cancer.
Records of regular reviews and
audits of GPs‟ referral practice.
Ensure the nominated lead for patient
information makes sure that the specific
information developed by the Cancer
Network for patients and carers with
suspected cancer is available and being
proactively given to them on referral.
Patients are offered the specific
information on referral.
Work with the secondary sector to ensure
mechanisms are in place so after a
patient has been diagnosed, the GP is
informed of the diagnosis by the end of
the following working day.
Systems are in place to ensure
timely notification from
secondary sector of the patients‟
diagnosis
Diagnosis
An accurate register of all patients with a
diagnosis of cancer is maintained
(excluding non-melanotic skin cancers)
Cancer registers are in place.
Cancer registers are kept up to
date.
Provide information and advice to
patients so that they are aware of how to
access local primary care and support
services including the out-of- hour‟s
services.
Written patient information on
access to services is available.
103
Appendix F
UK Performance Indicators361 362
Headline Indicators
Number of cases referred (as a proportion of estimated lung cancer cases)
% cases with a cyto-histological diagnosis
% cases reviewed by a MDM
% cases undergoing surgical resection
% cases receiving any anticancer treatment (indicators measured overall, and by tumour type and stage)
Key data items:
National Health Number, ICD code
Date first seen by lung cancer service and by which service
Basis of cancer diagnosis & date of diagnosis
Histology
TNM (final pre-treatment)
MDT discussion
Performance status & significant comorbidity (co-morbidity of such severity as to rule out a radical treatment that would otherwise be the preferred option)
Treatment type, date, intent
Patient satisfaction assessment – survey/questionnaires
Australian Performance Indicators (Prince Charles Hospital, Qld)* Survival Overall survival by Area Health Service Overall survival: non-small cell lung cancer patients Survival by stage I & II, IIIA, IIIB, IV Overall survival: small cell lung cancer patients Survival for limited and extensive disease Treatment Overall proportion of NSCLC who receive surgical resection, chemotherapy or radiotherapy Proportion of stage I & II, IIIA, IIIB, IV NSCLC patients who receive surgical resection, chemotherapy or radiotherapy Proportion of NSCLC patients who receive surgical resection alone Proportion of stage I & II, IIIA NSCLC who receive surgical resection alone Proportion of NSCLC patients who receive radiotherapy alone Proportion of stage I & II, IIIA, IIIB, IV NSCLC patients who receive radiotherapy alone Proportion of NSCLC patients who receive chemotherapy alone Proportion of stage I & II, IIIA, IIIB, IV NSCLC patients who receive chemotherapy alone Proportion of NSCLC patients who receive radiotherapy or chemo-radiotherapy Proportion of NSCLC patients who receive chemotherapy or radiotherapy Proportion of limited disease SCLC patients who receive treatment Proportion of NSCLC and SCLC patients who die in acute hospital setting Patient Journey Time from date of diagnosis to date of first definitive treatment of chemotherapy Time from date of diagnosis to date of first definitive treatment of radiotherapy Time from date of diagnosis to date of first definitive treatment of surgery Variables Area Health Service (AHS); Gender; Urban and rural residence; Age; Performance status (ECOG); Lung function; Significant weight loss
* Personal communication from Prof K Fong (Clinical Director, Respiratory Medicine, PCH)
