Moving forward with confidence: increasing the capacity ... · Acknowledgement is also provided to...

Victorian Cancer Survivorship Program Pilot Project Report

31 March 2014

Moving forward with confidence:

increasing the capacity for self-management in cancer survivors

Final Report – Revised June 2014 Page 2 of 140

Acknowledgements

The project officer wishes to acknowledge and thank the following people who were integral to the

development, implementation and evaluation of this project.

Project nurses Elizabeth Foster, Katherine Lane, Rosie Brown, Rosie Hoyt, Peter Shuttleworth, Delwyn Morgan and

Michael Cooney

Project design Emma Sayers

Project steering committee Fay Fraser, Laura Petrie, Maree Stafford, Christine Scott, Maree Glynn, Janet Phillips, Katherine

Simons and Melissa Shand

Queensland University of Technology Professor Patsy Yates and Kate Hunt

Special thanks to Ms Karen Barclay, Prudence Poon and Hugh Burch at Northern Health and the

HELPLINE nurses, Anna Boltong and Karen Conte of Cancer Council Victoria

Acknowledgement is also provided to Claudia Aguero-Palmeira (QUT Research Assistant) for the

assistance with preparing the original evaluation protocol and materials.


Contents Executive summary ...................................................................................................................... 5

Key messages .............................................................................................................................. 8

Section 1: Background/Context ................................................................................................. 9

1.1 Health service .......................................................................................................................... 9

1.2 Catchment population demographics ..................................................................................... 9

1.3 Needs assessment ................................................................................................................. 10

1.4 Other health service providers locally and other linkages .................................................... 12

Section 2: Project – survivorship model ...................................................................................... 14

2.1 Aims and objectives ............................................................................................................... 14

2.2 Pilot model ............................................................................................................................ 14

2.3 Evaluation plan ...................................................................................................................... 22

Section 3: Project Implementation .......................................................................................... 27

3.1 Implementation strategy ....................................................................................................... 27

3.3 Key lessons from the implementation process ..................................................................... 33

3.4 Resources/development of resources to support the model ............................................... 39

3.5 Workforce training and education ........................................................................................ 41

3.6 Communication strategies- to date and planned .................................................................. 42

3.7 Sustainability strategies ......................................................................................................... 43

Section 4: Evaluation Results - summary .................................................................................. 45

4.2 Aims and objectives ............................................................................................................... 49

4.3 Issues and challenges with the evaluation ............................................................................ 65

4.4 Overall assessment of pilot model of care ............................................................................ 66

Section 5: Sustainability considerations ................................................................................... 69

Section 6: Potential scope for extension/spread of survivorship care ....................................... 70

Section 7: Next steps for project locally – next 2 years ............................................................. 72

Section 8: Overview of project impact/Conclusion ................................................................... 74

8.1 Impact/value ............................................................................. Error! Bookmark not defined.

8.2 Key lessons ............................................................................... Error! Bookmark not defined.

8.3 Policy and system level questions that have been raised by this project ..... Error! Bookmark

not defined.

8.4 Top 10 tips ................................................................................ Error! Bookmark not defined.

Section 9: Recommendations .......................................................... Error! Bookmark not defined.

Section 10: Expenditure Summary ............................................................................................. 80

10.1 Major budget variations ........................................................................................................ 80


10.2 Issues ..................................................................................................................................... 80

10.3 Include full financial acquittal as a separate joint-submission .............................................. 80

Section 11: List of Attachments/appendices .............................................................................. 81

Authorship 82

Certifications ............................................................................................................................. 82


Executive summary

Background

The North Eastern Melbourne Integrated Cancer Service (NEMICS) is a cancer clinical network that

works to improve cancer care. NEMICS was funded by the Victorian Department of Health to trial a

care plan with cancer survivors following hospital-based treatment for early cancer. Three public

health services in the NEMICS region, the Cancer Council Victoria Nurse HELPLINE Service and

Queensland University of Technology partnered to deliver this project.

NEMICS region acute health services provide curative and palliative treatment for cancer and at the

outset of this project there were few survivorship initiatives identified that would provide care and

support to cancer survivors once they had completed their treatment. Given the growing evidence

of long term and late effects of cancer and cancer treatments, the need to better prepare survivors

for transition from hospital-based treatment was identified.

The project piloted a survivorship plan that used a supported self-management approach.

Supported self-management has been proposed as a key tenet of survivorship care in the setting of

increasing numbers of people surviving cancer and limited healthcare resources.i Emerging evidence

suggests that supported self-management interventions that assist survivors to feel confident to

manage their health and develop wellbeing goals can be effective for cancer survivors.ii

Aims

1. To provide cancer survivors with adequate knowledge and support to:

More independently and competently manage their post-treatment health

Optimise their sense of well-being in the context of their disease history

2. Build professional awareness of common issues for cancer survivors and their particular needs

in the post-treatment phase.

3. Educate cancer professionals to promote survivor self-management.

Methods

A survivorship plan developed by Queensland University of Technology was modified for this project.

Supportive care screening, a wellbeing goal setting template and tailored tumour specific treatment

summaries were added to the plan. Participants were recruited from the following services at three

health services: clinical haematology, breast cancer psycho-educational transitions program,

colorectal service and an ambulatory oncology rehabilitation program. Eligible survivors had

completed treatment for stage 1-3 cancer within the preceding twelve months and did not have

acute major mental illness or cognitive impairment. Recruitment was later extended to include

eligible survivors who self-referred to the Cancer Council Victoria HELPLINE service or Cancer Council

Victoria support groups, and to breast service survivors. In response to slow recruitment, key


oncology health professionals working across NEMICS region health services were then asked to

promote the project to eligible survivors across a range of programs.

Oncology nurses supported participants to develop their plans either at the health service, or over

the phone. A HELPLINE nurse provided follow-up telephone support one month, four months and

eight months following the initial plan. Follow-up calls aimed to track progress with identified

concerns, support motivation for goal attainment, link survivors with services and identify new

concerns and goals. At each contact point, a copy of the plan or a plan update was shared with the

participant, their GP, the health service and the HELPLINE service.

Supportive care screening using the NCCN Distress Thermometer and Problem Checklist was

completed with initial plan development and at the four month follow-up phone call. Participants

were interviewed by the project officer pre- and approximately six months post-intervention to

evaluate the impact of the project on their ability to self-manage their health and wellbeing.

Interviews included measures of health literacy (the Health Literacy Management Scale or HeLMs),

health education impact (the Health Education Impact Questionnaire or heiQ), self-efficacy

(subscales of the Assessment of self-efficacy in managing cancer symptoms and treatment side-

effects) and participant feedback about the usefulness of the plan and follow-up calls.

Oncology nurses received education about survivorship and were taught skills to promote

participant self-management through an education session and mentoring sessions incorporating

Motivational Interviewing approaches. To evaluate the education, nurses completed surveys pre-

and post-education and at the end of the project as well as focus group feedback.

Results

The project recruited 64 participants with 50 completing the project. Project evaluation was

completed with 43 participants. At baseline and follow-up, an average of 6.19 problems and 7.65

problems respectively were reported on the Distress Thermometer and Problem Checklist. Average

distress scores were 4.33 at baseline, compared with 3.97 at follow-up. Fatigue, worry, sadness and

difficulty sleeping were the most commonly reported problems at both time-points.

Survivor level evaluation

At baseline, the participants were highly health literate (average HeLMs scores for seven out of the

eight health literacy domains were greater than four out of five). Statistically significant change at

post-intervention was found for one out of eight domains on the HeLMs; ‘patient attitudes towards

their health’.

Baseline feedback on the heiQ indicated that while 93% reported ‘they had a very good idea of how

to manage their health problems’, levels of engagement in health promoting behaviours varied. In

addition 21.1% reported they ‘did not have effective ways to prevent their symptoms from limiting

what they could do in their life’. Statistically significant change was found at post-intervention for

two out of eight heiQ domains; ‘positive and active engagement in life’ and ‘emotional wellbeing’. It


was noted that the phrasing of exercise questions on the heiQ did not capture some changed

exercise routines.

At baseline, high average confidence scores of 82.41 were recorded on the Assessment of self-

efficacy in managing cancer symptoms and treatment side-effects and no statistically significant

improvements to confidence levels were found post-intervention.

During interviews, 86% of the participants reported that ‘the plan had impacted their ability to

manage their health’ and 88.4% reported that they ‘developed goals or strategies’ whilst using the

plan. Additionally, 86% responded that ‘developing goals and strategies helped them to return to

activities that were important to them or to take up new activities’ and 79.1% thought that they

‘developed new knowledge, skills or strengths’ while using the plan. In interpreting this data, it is

important to note that those who disengaged from the project did not take part in the post-

intervention interview potentially limiting negative feedback from the evaluation. Themes for

wellbeing goals included planning holidays, increasing exercise, improving diet, taking up leisure

activities, managing challenging emotions related to cancer, managing relationship challenges,

returning to work and changing work/life balance.

The level of engagement with the plan and follow-up interventions varied markedly between those

who were highly engaged and made lifestyle changes that they attributed to the project, and those

who did not engage or commented that they would have attained wellbeing goals without the

project. Participants experiencing anxiety/depression reported benefit from the support provided.

Health professional level evaluation

Nurses reported increased confidence promoting self-management however it was not possible to

compare the pre-education and final survey data due to the small number of nurses who completed

the final survey. The HELPLINE nurses demonstrated high utilisation of self-management support

skills and applied this model of care to selected general HELPLINE callers. This project suggests that

cancer non-government organisations may be well positioned to provide this type of support, given

adequate resources.

System level lessons

The project highlighted the following challenges: capturing survivors at end of treatment; targeting

self-management interventions to those who will benefit most; timing interventions for survivor

readiness; delivering interventions within existing resources and transitioning to self-management

support approaches within acute health services.

Developing capacity to routinely identify and capture survivors at end of treatment is critical for

implementing system-wide survivorship care. Opportunities to extend the reach of supported self-

management interventions for cancer survivors through stronger partnerships between acute health

services, community health and rehabilitation services and cancer non-government organisations

have emerged. Further research is required to define who benefits most from supported self-

management and to develop screening tools to assist in targeting this type of intervention.


Key messages

This project included only those survivors who had completed active treatment. Defining

survivorship at end of treatment excludes a number of cohorts who could benefit from self-

management interventions; some survivors never receive an ‘all clear’ and live for many years

with long-term impacts of cancer, some have indolent disease, some develop metastatic

disease, and others lack readiness to engage with survivorship interventions at end of

treatment.

Many survivors receive cancer treatment across multiple services; improving communication

is critical to enabling efficient identification and capture of survivors at end of treatment.

Lack of resources to identify and screen survivors at end of treatment in surgical and

outpatient areas of health services presents a road block to coordinating care for survivors.

More evidence is needed to develop efficient and reliable risk stratification tools for self-

management support interventions. Survivorship risk stratification models should consider

social, psychological, physical and practical factors, as well as disease and treatment factors.

Most participants who engaged with this self-management support intervention that

incorporated self-generated goals, motivational interviewing approaches and follow-up

interventions developed and achieved/re-framed most of their wellbeing plans. Given the

high baseline health literacy of recruits, it is unclear whether these findings will generalise to

populations with lower health literacy and whether some may have achieved wellbeing goals

without the intervention. Further research is required to evaluate whether behaviour changes

are maintained in the longer term.

Telephone delivered self-management support interventions were acceptable to participants

and most did not require three follow-up calls.

This chronic disease self-management intervention was a good fit with the model of care, skill-

set and philosophy of the Cancer Council Victoria HELPLINE service. The delivery of outcall

self-management interventions did however, present some major challenges: managing work

flow to balance incoming calls with scheduled outcalls, delivering time consuming

interventions within existing resources and contacting participants during working hours.

Integrating chronic disease self-management approaches is challenging within acute health

services due to their traditional role definition, resources and treatment priorities.

Participants had individual needs; the level of engagement with this type of intervention and

preferred location and timing for survivorship support delivery varied.

Establishing defined roles and pathways within and between acute hospitals, cancer NGOs, GP

practices, rehabilitation and community health services in the provision of survivorship care

and self-management support could improve the accessibility of services throughout

survivorship.


Section 1: Background/Context

1.1 Health service

The North Eastern Melbourne Integrated Cancer Service (NEMICS) is a cancer clinical network that

works to improve cancer care. Across the north eastern region of Melbourne, cancer care is

provided by four public health services and several private hospitals. Public cancer services are

provided by Austin Health, Eastern Health, Northern Health, and Mercy Hospital for Women.

The NEMICS region provides 19.0% of Victorian public health service admissions with a cancer

diagnosis. In the financial year 2010-2011, 17,492 people with a malignant cancer diagnosis were

admitted to a NEMICS region health service: 47.26% (8,266) to a public hospital, 59.14% (10,344) to

a private hospital and 6.39% were admitted to both public and private health services. Since 2009,

public and private sector patient numbers have increased by 5.4% and 16% respectively. iii

Cancer-related admissions account for 11% of all NEMICS public health service admissions. Surgical

services for cancer patients are provided at eight public healthcare sites and several private hospitals

throughout the region. Chemotherapy is provided at seven public healthcare sites and three private

hospitals. Radiotherapy is provided by two public and two private services. It is common for

NEMICS region patients to receive cancer treatment across multiple health service systems and sites.

1.2 Catchment population demographics

The NEMICS region includes the local government areas of Banyule, Boroondara, Darebin, Knox,

Manningham, Maroondah, Nillumbik, Whitehorse, Whittlesea and Yarra Ranges. NEMICS residents

comprise one third of the population of metropolitan Melbourne. There were 1,340,257 people

estimated to be resident in the NEMICS region in June 2011; an increase of 16% over the preceding

ten years.

The percentage of the population aged over sixty-five varies across the region from 9-10 % in

northern local government areas to 17-19% in Whitehorse and Manningham. Similarly, the

percentage of the total population aged 15 years and over who have post-school qualifications

varies between 48.6% and 68.3%; health literacy levels and average household incomes vary

markedly across the region.

The proportion and mix of culturally and linguistically diverse residents also differs across the region.

The number of residents who speak a language other than English at home varies from 8.1% to

42.7%. The most common languages other than English spoken at home in the region are Mandarin,

Greek, Italian and Cantonese. Darebin, Whittlesea and Yarra Ranges are home to Aboriginal and

Torres Strait Islander communities.


Regional demographics and cancer survivors

Where the term cancer survivor is used in this report, it refers to people who have completed

intensive hospital-based cancer treatment with the intent of cure, remission or achieving stable

disease.

The demographic data outlined above highlights the increasing need to tailor services for older

people living with cancer (in eastern local government areas). Survivorship interventions will also

need to meet the needs of diverse cultural groups within the region, including significant numbers of

non-English speaking people living in the northern suburbs of Melbourne.

The five year survival rate for cancer in the NEMICS region is 68% with 6,300 new cases diagnosed in

the region each year however both the total number of cancer survivors living in the NEMICS region

and the health expectancy and disease burden of these survivors is unknown. This poses a challenge

for understanding the magnitude of survivorship needs in the region and for planning services.

Macmillan Cancer Support estimates that 25% of cancer survivors living in the United Kingdom

experience poor health/disability following cancer treatment. iv International variation between

health systems and survivor characteristics impact the ability to generalise across survivorship

populations but this percentage may provide some initial guidance for measuring health

expectancy/disease burden for cancer survivors in the region once improved survival prevalence

data becomes available.

1.3 Needs assessment

Increasing population of survivors

The ageing population, advances in cancer screening and improved treatments are creating a

growing population of cancer survivors. The Cancer Council Victoria predicts the number of new

cancer diagnoses each year in Victoria will increase 53% by 2023-2027. In response to this growing

population, Victoria’s Cancer Action Plan 2008-2011 identified the need to develop innovative

models of follow-up care and outpatient support for cancer survivors.v

Challenges facing survivors

Whilst evidence suggests that most cancer survivors enjoy good quality of life following cancer

treatment, many survivors experience significant ongoing health impacts.vi Cancer and its

treatments can have a range of persistent physical, psycho-social, spiritual and practical impacts.

‘Cancer patients commonly report fatigue… pain, anxiety, depression and problems sleeping as

frequent and distressing symptoms’.vii Further common causes of distress in cancer survivors

include: fear of cancer recurrence, lymphoedema, weight loss/gain, altered concentration and

memory, urinary or faecal incontinence, reduced fertility and changes to sexual function.

In addition, some treatments are associated with late effects/increased risks of other chronic

conditions; reduced cardiovascular and respiratory system function, hypertension, hyperlipidaemia,

diabetes and osteoporosis are more prevalent in cancer survivors.viii Without appropriate


management, these (and other) late effects can cause disability, poor quality of life or reduced life

expectancy.

Managing finances, maintaining housing, obtaining insurance, returning to work and coping with the

impact of illness on relationships present major challenges for some survivors. With so many

potential impacts some survivors articulate the experience of searching for a ‘new normal’; a new

sense of self following cancer.ix

Cancer patients depend heavily on the specialist knowledge and skill of the oncology team during

treatment. Literally ‘their lives are in the hands’ of the hospital team. Following treatment, some

survivors experience feelings of abandonment and a lack of confidence in their body and their ability

to monitor for signs of cancer recurrence. x Cancer, its treatments and the acute health model of

care can all negatively impact self-efficacy. “…nothing is in my control. There’s two things which

control my life now, the cancer and hospital…I’m the middleman. I can only do what I’m told to

do….I don’t really have a say in it, do I?”xi

Some cancer survivors report that they feel unprepared for what to expect after cancer. This may be

made more difficult by community perceptions that people who are cured of cancer are ‘lucky’ and

do not have ongoing health concerns. It is therefore common for informal supports to also withdraw

at the same time as health service support.

Acute health service orientation and linkages with community-based care

NEMICS region cancer services are focused on providing treatments with intent of cure,

management and palliation. In 2011, when survivorship project applications were sought, there

were few survivorship initiatives operating in the NEMICS region. Supportive care screening was

continuing to be embedded across the health services but resources precluded routine screening at

end of treatment. Without capacity to identify and screen survivors at end of treatment, problems

cannot be addressed for individuals, important linkages are not made and at the system level,

survivorship disease burden is not measurable.

At the commencement of this project, some oncology health professionals working for acute health

services in the region were aware of common challenges that face survivors after treatment, but

others had received little education about survivorship. All of the health professionals consulted in

“Cancer is life-changing like childbirth…You feel thrown from the nest after the hospital treatment ...post-treatment, you expect relief. I did not expect anxiety".

Project participant T6: baseline interview

“Sometimes you feel like you fall between the cracks”

Project participant E6: baseline interview

“I don’t quite know why I’m calling today but this should be a happy time for me but I’m not happy and I don’t know why everyone is looking at me like well your cancer is cured now so what is your problem?...’That’s one we get a lot of’… I was expecting to be over the moon but I’m really quite stuck now and don’t know why“

HELPLINE nurse reporting common reason for calls to the HELPLINE from survivors


the development phase of this project believed that there was a gap in the system; leaving some

survivors poorly prepared for life after treatment.

The Cancer Council Victoria HELPLINE (to be referred to here as the HELPLINE) nurses routinely

received calls from survivors with unmet needs. The HELPLINE nurses reported that survivors

commonly called for the following reasons: unmet supportive care needs, request for information

about diet and exercise recommendations, anxiety related to fear of recurrence (heightened at time

of follow-up investigations) and a mismatch between expectations of survivorship and reality

(normalising and validating).

Risk stratified care and supported self-management

Given the large numbers of survivors and the highly variable experience of survivorship, the

importance of risk stratifying survivors has been highlighted.xii Despite broad agreement that risk

stratification is required, who is most at risk of survivorship difficulties, and who benefits most from

which types of interventions, remains unclear.

Supported self-management has been proposed as a cost-efficient approach for care of survivors

who are at a lower risk of serious and persistent survivorship difficulties. Macmillan Cancer Support

completed a review of self-management support initiatives and concluded that self-management

support approaches can be effective for cancer survivors. Targeting self-efficacy and including

survivor-generated goals were found to be integral to effective self-management support

interventions for cancer survivors.xiii This project piloted a survivorship care plan which was

delivered as a supported self-management intervention.

1.4 Other health service providers locally and other linkages

The HELPLINE service provides information and support for people affected by cancer. They were

seeking ways to improve linkages with acute oncology services to enable more timely coordination

of information and support for survivors. The HELPLINE service had capability to expand their

services for survivors and was interested in adopting a self-management support model.

Whilst the HELPLINE service does not provide specific medical advice, it was thought that providing

the HELPLINE nurses with specific medical and care plan information would better enable them to

assist survivors with wellbeing planning. Establishing a partnership between acute health services

and the HELPLINE would enable the transfer of this information.

General practitioners (GPs) are key long term contacts for cancer survivors and were identified as

important targets for the survivorship care plan piloted by this project. There was no existing

communication tool that combined treatment summary, follow-up plan, survivorship concerns,

“…sometimes you don’t know what there is [rehab services] and they (health professionals) don’t know what there is…this is six to eight months out from diagnosis…there is a huge gap there”

Project participant E9: baseline interview


survivors’ health and wellbeing goals and specialist contact information. This information could

facilitate the development of primary care chronic disease plans for survivors who had complex

needs or co-morbidities. GP liaison and General Practice Victoria were therefore identified as

important stakeholders during the design and implementation of this project.


Section 2: Project – survivorship model

Moving forward with confidence project

2.1 Aims and objectives

Aims


more independently and competently manage their post-treatment health, and

optimise their sense of well-being in the context of their disease history.


in the post-treatment phase.

3. Educate cancer professionals to promote increased self-management abilities in survivors

Objectives

To build increased survivor capacity, the intervention was designed to:

Provide written information and education on the impact of cancer and cancer treatments

Foster self-management skills to increase health self-efficacy (including recognising symptoms

of relapse and knowing when and how to seek professional help)

Foster increased confidence in local generalist care and provide reassurance regarding

ongoing capacity to access specialist care when needed

Link to community based professional supports and peer support networks

Better prepare survivors for life after cancer

To build increased professional capacity, the intervention sought to:

Provide education on common issues for survivors and their carers

Promote a chronic disease management framework, heightening awareness of the phase

beyond primary treatment and incorporating self-management principles

Teach professionals the skills to facilitate survivor self-management capability

Encourage a shift from the treatment of disease to the promotion of wellness

To build increased system capacity, the intervention aimed to:

Establish a tool and pathway for informing/educating the survivor/family

Establish a tool and pathway for communicating with/educating the GP

Strengthen relationships with primary care and the community sector to develop more

effective referral pathways

2.2 Pilot model

Description of pilot model of care

The project intervention was developed using a chronic disease self-management framework.

This approach was selected for the following reasons:


Supported self-management approaches have been demonstrated to be effective for people

with a range of chronic conditionsxiv

Strengthening survivor self-efficacy is seen as integral to preparing survivors for transition

from active treatment. Supported self-management interventions do more than provide

information and support; they equip survivors with the skills and confidence to be active in

managing their health.

Supported self-management, shared care and complex case management have been

proposed as three models for risk stratified follow-up of cancer survivors. xv

The supported self-management model could have application for large numbers of survivors

stratified as low risk.

Re-orienting the acute health system in the NEMICS region to target survivorship needs will require a

long-term service re-design approach. This pilot model was developed as phase one of a longer term

strategy to build capacity for improved survivorship care. Addressing survivorship through adopting

supported self-management approaches requires the building of capability in both survivors and

health professionals. Major culture and practice changes are required. To successfully effect

change, interventions need to take account of the need for not one, but multiple shifts in

professional culture and practice; survivor thinking/behaviour; and in the relationship between the

hospital and community sectors.

This pilot provided an opportunity to create a mutual responsibility for meeting survivors’ needs,

shared by NEMICS region public health services, a community-based service and the survivor.

Creating a direct pathway from the clinical care team to the HELPLINE was central to enabling this

shared responsibility.

Description of specific strategies and interventions

Survivorship care plan

The ‘Moving forward with confidence’ project planned to implement a survivorship care plan

entitled ‘My Health and Wellbeing Plan’ with selected survivor groups across the network. This plan

was initially developed by Professor Patsy Yates of Queensland University of Technology (Q.U.T.) and

piloted across two health services in Queensland. It aimed to capture key treatment information and

to assist survivors to manage their long term health, including symptoms to watch for and steps to

take to stay healthy.

For this project, the care plan was altered to highlight wellbeing, screen for supportive care needs

and incorporate survivor initiated goals. Participating services were also invited to tailor the

treatment summary section of the tool for their population. Amendments and health literacy

editing were completed in close consultation with consumers and multidisciplinary cancer teams.

See Appendix 1 ‘My Health and Wellbeing Plan’


The amended ‘My Health and Wellbeing Plan’ aims to provide a structure for a tailored, self-efficacy

directed conversation. Motivational Interviewing techniques are central to the delivery of the

intervention; creating a different kind of conversation between the nurse and the survivor. The

interaction is structured to focus on what the survivor identifies as important and aims to strengthen

motivation to develop and action wellbeing goals.

Information pack

Prior to creating their ‘My Health and Wellbeing Plan’, survivors are given an information pack. The

pack contains information on common issues experienced by cancer survivors/carers, presented in

the following resources:

Cancer Council ‘Life after Cancer’ booklet

‘Just take it day to day. A guide to surviving life after cancer’ DVD developed by the Peter

MacCallum Cancer Centre.

This information was provided to assist survivors to identify concerns when they developed their

plan. Participants were encouraged to bring their information pack to relevant appointments.

Nurses added specific information tailored to individual needs where required. For example,

information regarding community based organisations and services such as Breast Cancer Network

Australia, BreaCan, the Leukaemia Foundation, Cancer Connect, ‘Life after Cancer’ forums, online

supports and targeted information addressing specific concerns.

A four part intervention

Participants would develop their ‘My Health and Wellbeing Plan’ during an appointment with a

specialist cancer nurse; either in person, or over the phone. Some would develop their plans in

conjunction with attending group programs. Supportive care screening was planned at the outset of

initial plan development.

A HELPLINE nurse would provide follow-up interventions one month, four months and eight months

following initial plan development. Most follow-up interventions would be delivered by telephone,

although Skype and face-to-face interventions could also be provided. The follow-up interventions

aimed to:

support progress with wellbeing goals, enable problem solving and strengthen motivation,

check whether information and support needs identified in the plan had been addressed, and

identify new information and support needs where applicable.

Supportive care screening would be repeated at the four month follow-up intervention. At each

intervention point, a one page ‘My Health and Wellbeing Plan’ update would be sent to the

participant, their GP and the health service medical record. Inclusion of four intervention time-

points was designed to strengthen motivation over time, provide support with barriers to goal

attainment and allow participants to identify concerns over an eight month period. Please see figure

one overleaf.


Figure 1 Intervention summary

Shared care approach

The HELPLINE service is the shared care project partner for this project. The project did not aim to

shift survivorship care provision to general practice; however both participants and GPs were

encouraged to discuss ‘My Health and Wellbeing Plan’ progress during GP consultations.

Risk stratification

Survivors with stage 1-3 cancer who had completed treatment within the preceding twelve months

and had no significant cognitive impairment and no acute major mental illness were eligible to take

part in the intervention. Some survivors with stage 3 cancers who were more likely to re-engage

with active treatment in the medium term were not offered the intervention.

Governance and Stakeholders

The NEMICS Governance Committee oversaw the project and a project steering committee met

three monthly (or as required) to guide project decision making and delivery.

See Appendix 2 Governance Committee membership and terms of reference

The project steering committee included consumers and managers working with each of the partner

services as follows:

NEMICS manager (principal investigator)

Consumer with an experience of cancer

Consumer with experience of self-management interventions/chronic condition care

Operations Director-Medicine, Northern Health

Associate Program Director Ambulatory & Community Services (Community Access and Health

Independence) Eastern Health

Manager of Wellness and Supportive Care, Austin Health

Manager, Cancer Information and Support Service, Cancer Council Victoria

NEMICS supportive care service improvement facilitator

See Appendix 3 Project steering committee terms of reference

Information pack

provided pre-intervention

1

My Health & Wellbeing Plan & Distress Screen completed with

nurse

2

HELPLINE

One month follow-up call

3 HELPLINE

Four month follow-up call

(Distress screen)

4

HELPLINE

Eight month follow-up call


Target populations

Participants would be recruited from the following services:

Ambulatory Oncology Rehabilitation Program (Eastern Health)

Transitions Psycho-educational Breast Cancer Group (Austin Health)

Haematology Service (Austin Health)

Colorectal Service (Northern Health)

1. Ambulatory Oncology Rehabilitation Program (initial recruitment target: 40 participants)

The Ambulatory Oncology Rehabilitation Program provides twice weekly education and

exercise, within a seven week program. Group participants are at varying stages of cancer

treatment and have varied tumour types. This cohort was previously identified as requiring

on-going post program planning to assist with the transition to increased independence and

community based supports. This existing program was considered ideally suited for expansion

to include the development of ‘My Health and Wellbeing Plan’.

The plans would be developed over the seven weeks of the rehabilitation program and

reviewed at the post-rehabilitation appointment. Repeat functional assessments, quality of

life surveys, home exercise program prescriptions and referrals to community based programs

would also be completed at this appointment. On-going supportive care concerns at the end

of the program would be incorporated into ’My Health and Wellbeing Plan’. The program

nurse would identify eligible survivors and the group facilitators would assist with

development of the plans

2. Breast Cancer Transitions Program (initial recruitment target: 30 participants)

The Breast Cancer Transitions Program is a four week group program facilitated by a breast

care nurse, psychologist, social worker, psychology registrar, dietitian and physiotherapist.

Session topics include: living with uncertainty; coping with bodily changes after breast cancer;

healthy eating and exercise after treatment; coping with the reactions of others and ‘creating

the life I want after breast cancer’. Women who have completed intensive hospital-based

treatment for early breast cancer are invited to attend. The breast care nurse would identify

eligible recruits and ‘My Health and Wellbeing Plans’ would be developed within the group

program with the assistance of the group facilitators. The group was facilitated by a breast

care nurse, a social worker and a psychologist.

3. Clinical Haematology (recruitment target: 25 participants)

Clinical haematology provides inpatient and outpatient services. The project planned for

survivors to be approached at their first outpatient appointment following completion of

primary treatment. The haematology nurse coordinators would recruit eligible survivors.

Stable lymphoma and post-BMAT (bone marrow transplant) survivors would be targeted.

BMAT survivors were selected because a clear survivorship transition point could usually be


identified and they are at risk of significant late effects. Participants would create their ‘My

Health and Wellbeing Plan’ during a face-to-face outpatient appointment with a cancer nurse.

This appointment would coincide with a scheduled haematology review appointment.

Haematologists and oncologists indicated that they could identify eligible survivors and flag

them to the nurses.

4. Colorectal service (initial recruitment target: 60 participants)

Survivorship after surgical treatment for colorectal cancer is complicated by the ongoing

potential for local and distant recurrence and the development of metachronous tumours.

Those who have ‘high-risk’ tumours and/or incomplete assessment at the time of diagnosis

and treatment have an increased risk.

The project would enable survivors undergoing surgery for colorectal cancer at Northern

Health to develop their ‘My Health and Wellbeing Plan’ within four weeks of surgery. The

oncology nurse practitioner candidate would recruit eligible survivors to the project. A

detailed treatment summary and medical follow-up plan developed by a colorectal surgeon in

consultation with survivors would be included in the plan. The treatment summary would be

populated by a health information manager attached to the colorectal unit and checked by

the treating surgeon. The plan would be developed during a face-to-face appointment with

the oncology nurse practitioner candidate.

Workforce roles and engagement

Acute health service cancer health professionals

Engaging a larger number of clinicians could share the workload for the project and better support

culture change within the services that participated in the project. During the planning phase of the

project, the project development team met with a wide range of health service staff from senior

management, oncology nurses, clinical leads, unit managers and program staff as appropriate to

define project parameters and target groups. Following recruitment of a project officer, a number of

clinical staff, including specialist oncology nurses, social workers, a clinical psychologist,

physiotherapist and an exercise physiologist would be engaged in the project.

Whilst supportive care screening and care planning form part of cancer nurses’ existing roles, health

service oncology nurses had varied role descriptions; some were actively involved in providing

group-based survivorship support and others focussed on treatment phase support. The project

planned to implement ‘My Health and Wellbeing Plans’ by using existing groups and creating new

individual survivorship consultations.


Cancer Council Victoria HELPLINE Service

The HELPLINE service was highly engaged with the project from its inception as they were seeking

ways to partner with acute health services. The HELPLINE nurses’ roles involved frequent contact

with cancer survivors and provision of information, support, telephone counselling and referrals.

General Practitioners

Although cancer survivors are prevalent in the community, they are small proportion of a GP’s

caseload. Project information would be disseminated via local GP Divisions and in GP newsletters.

Completed ‘My Health & Wellbeing Plans’ and plan updates would be sent to the participant’s GP.

Depending on GP feedback about the value of an electronic version of ‘My Health and Wellbeing

Plan’, a preliminary scoping exercise into the development and implementation of an e-version of

the plan would be undertaken.

Engagement of other stakeholders/HSPs

Refer to section 3.1 – Modifications made to the model for additional stakeholders engaged.

Organisational and structural setting

Using a network approach, Austin Health, Northern Health and Eastern Health would collaborate to

develop self-management oriented survivorship care plans with selected survivor groups within the

region. This could allow for a common approach to education and resources for survivors, provided

in a variety of settings. Coordinated by NEMICS, this collaboration would strengthen partnerships;

foster information sharing and the development of a ‘community of practice’; improve consistency;

avoid duplication and maximise the use of resources. Project partners were engaged from the initial

project design and development phase.

Supporting resource requirements

See Appendix 28 Financial Acquittal for list of supporting resources

Workforce training requirements

All professionals involved in the development of ‘My Health and Wellbeing Plans’ would participate

in training in supported self-management approaches. This training program would adopt the

‘Cancer Survivor Self-Management’ education modules developed by Professor Patsy Yates and the

Queensland University of Technology ‘Developing Cancer Survivorship Self-Management Plans’

project team. It would provide a structure for health professionals to develop the skills required to

support survivors to self-manage.

After completing the training, the health professionals would be expected to:

Describe how the principles of chronic disease self-management can be applied in practice

Identify strategies for integrating a self-management approach into the ongoing care and

support of people following cancer treatment

Develop individualised self-management care plans with survivors


Identify resources in their workplace and local community that can provide support and

evidence-based care for survivors

In addition to the initial education provided, project nurses would be offered five sessions of

mentoring in self-management facilitation skills. Embedding supported self-management

approaches requires ongoing structured opportunities for reflective practice. Mentors with

expertise in applying and teaching chronic disease self-management approaches would be engaged.

Motivational Interviewing philosophy and skills would be embedded within the mentoring program.

Some nurses would receive mentoring in small groups and some would access individual mentoring.

Embedding of the model

Sustainability was considered from the outset of the project however, the focus was on evaluating

the effectiveness of the intervention in the context of limited evidence and implementation studies.

The project planned to first evaluate the feasibility, usefulness and impact of the intervention and

then work towards embedding the intervention, depending on the project findings. Shifting practice

to supported self-management approaches would require a major culture change for services. The

project planned to engage as many health professionals as possible in the education and mentoring

program and in delivery of the plans to support changes to the service culture.

At the commencement of the project, the HELPLINE reported having capacity to sustain routine

provision of this type of follow-up intervention for survivors. Cancer Council Victoria wanted to

establish a referral pathway from the health services to the HELPLINE that could endure beyond the

project.

Other Victorian survivorship pilot projects were simultaneously evaluating whether hospital-

delivered survivorship nurse interventions could be funded within shared care models with general

practice at the time of this pilot project.

Hypothesized intended outcomes-immediate and intermediate

Survivors

Participants would be better able to self-manage their health post-treatment, including

recognising signs of relapse and knowing when and how to seek professional help

Participants would be assisted to work towards improved wellbeing

Participants would feel more confident accessing local generalist care and reassured that they

can access specialist care when required

Participants would be linked to community based support and peer networks

Carers

Carers were the not the target of this intervention. All participants would be offered the choice to

create their wellbeing plan with their carer present, although no specific outcomes were predicted

for carers.


Health professionals

Health professionals would be educated about common survivorship concerns in the post-

treatment phase

Health professionals would develop skills to promote survivor self-management

Nurses would be educated about rehabilitation and community health services, and the

‘Access to Allied Psychological Services’ scheme

Organisation /system

A tool and pathway for informing/educating the survivor/family would be established

A tool and pathway for communicating with/educating the GP would be established

Relationships with primary care and the community sector would be strengthened to develop

more effective referral pathways

Linkages between acute healthcare services and the Cancer Council Victoria would be

strengthened

A chronic disease management framework would be piloted within acute hospitals and a

cancer non-government organisation, heightening awareness of the phase beyond primary

treatment and incorporating self-management principles

A shift from the treatment of disease to the promotion of wellness would be encouraged

2.3 Evaluation plan

The following demographic data would be collected from the participant’s record to aid analysis:

age

gender

living arrangements

ATSI status

postcode

highest education completed and employment status

cancer type and treatments received.

Key questions to be answered

Survivor-level evaluation

Q. 1 Does the development of ‘My Health and Wellbeing Plan’ and engagement with follow-up

phone interventions assist participants to:

feel more confident to manage their post-treatment health, and

optimise their wellbeing in the context of their disease history?

Indicators:

health literacy competencies

knowledge, skills and behaviours employed to enable self-management

reported level of confidence with health literacy and management of key activities


Measures:

The following measures would be administered at baseline and six months post-intervention:

Health Education Impact Questionnaire Version 3 (heiQTM: Osborne, Elsworth &

Whitfield, 2007)

Health Literacy Management Scale Version 1.1 (HeLMsTM: Jordan, Buchbinder & Osborne,

2009)

Relevant subscales of the ‘Assessment of self-efficacy in managing cancer symptoms and

treatment side effects’ (Campbell, Yates, Clinton, Mirolo, & Sellick, 1998)

See Appendix 4 for information about these outcomes measures

Participant feedback about the impact of the intervention on self-management abilities would

be recorded post-intervention. Topics would include:

Further comment on the usability and acceptability of ‘My Health and Wellbeing Plan’

Whether goals and strategies could be developed during the self-management session

and follow-up interventions.

Barriers to self-management

Strengths identified

General feedback on the process/intervention

Suggestions for improvement

Beliefs about accessing generalist care/community care

Q. 1b Did participants develop and achieve wellbeing goals?

Indicators:

Number and types of goals developed and number of goals achieved

Measures:

Participant feedback at post-intervention interview

Goals documented during ‘My Health and Wellbeing Plan’ development and follow-up

sessions

Q. 2 Were participants provided with written information and education on the impact of cancer

and its treatment, including the likelihood of relapse?

Indicators:

Number of survivorship self-management plans developed and implemented (the plans

include information about the impact of cancer, its treatment and recognising signs of

recurrence)

Number of participants who received written information/education

Acceptability data of information/education from participants.


Measures:

Number of ‘My Health and Wellbeing Plans’ developed

Participant survey 6 months post-implementation

Q .3 Were participants linked to community based professional supports and peer support

networks (real and virtual) if they requested/had needs relevant to these services?

Indicators:

Number of participants who identified need for further link/number of those who were linked

Measures:

6 month post-implementation survey

Additional Data collection

The project planned for health service and HELPLINE nurses to collect the Distress

Thermometer and Problem Checklist pre-intervention and at four months post-intervention.

This intervention would not necessarily impact distress scores (multiple variables impact

distress) but this data could define problems reported at baseline and identify new onset

problems at the four month intervention point.

The evaluation sought to compare the effectiveness of three delivery mechanisms for the

development of self-management plans; plan developed during individual session with a

nurse, plan developed within seven week oncology rehabilitation program and plan developed

within Transitions Psycho-educational Group.

Health professional level evaluation

Q .4 Were cancer health professionals provided with education on common issues for survivors

and their carers in the post-treatment phase?

Indicators:

Number of in-services delivered

Number of professionals who attended in-services and their professional backgrounds

Number of articles published in health service/NEMICS newsletters raising awareness

Q 5. Did cancer health professionals receive education in methods to improve survivor self-

management abilities?

Q 6. Do cancer health professionals report increased use of methods to improve survivor self-

management abilities?

Indicators:

Evidence based education module on creating and implementing survivorship care plans

developed collaboratively with consumers and implemented (process).


Number of professionals who attended

Feedback on adequacy and appropriateness of education in building skill and confidence

to improve participant self-management abilities (outcome).

Measures:

Pre- and post-education survey of: knowledge, skills and confidence in developing self-

management abilities

Survey targeting behaviours that support survivor self-management completed at the

end of the project

Focus group feedback (early project, mid-implementation and at the end of project)

Focus groups would comprise 1- 1.5 hour sessions and should elicit qualitative reports

regarding the development of ‘My Health and Wellbeing Plans’ and barriers to

implementation

Topics for focus groups with health professionals would include:

Usability and acceptability of ‘My Health and Wellbeing Plan’

Barriers to successful implementation (survivor, clinician and service)

Feedback on the training received, mentoring process and process for plan

implementation

Advantages of using a self-management approach.

Suggestions for further improvement.

System level evaluation

To evaluate the impact of the intervention at the system level, data would be collected from project

records.

Q. 7 Was a tool and pathway established for informing/educating the survivor/family?

Q. 8 Was a tool and pathway established for communicating with/educating the GP?

Indicators

Tool containing minimum agreed content for informing and educating the survivor on

self-managing post-treatment developed.

Pathway for informing/educating the survivor agreed between all clinicians and

consumer representatives

Pathway for communicating with GP established and implemented

Acceptability of the pathway/tool tested among those who piloted it

Measures

Project records

GP short survey feedback


Q.9 Would relationships be strengthened with primary care and the community sector to develop

more effective referral pathways?

Indicator and Measure

Focus groups

GP short survey


Section 3: Project Implementation

3.1 Implementation strategy

Modifications made to the model

Four modifications were made to the initial project plan to assist recruitment challenges. They are

listed here in the order they were undertaken and summarised in table 1.

1. The breast service recruited to the project from May 2012 to July 2013 (~13 months). By

December 2013, it was evident that recruitment to the project from this program was not

going to meet its recruitment targets. In response the eligibility criteria was altered to include

all women who were eligible for the Transitions Program (regardless of whether they

attended the program). The breast care nurse provided a list of patients who had received

surgery to the project officer, who reviewed the health service record (including

correspondence section) to ascertain whether patients had completed treatment. The project

officer mailed invitations to eligible survivors and telephoned them to discuss the project.

Changing the eligibility criteria, would increase recruitment numbers significantly and place

pressure on breast care nurse resources. Consequently, the HELPLINE nurses were asked to

assist with the delivery of some initial plans for breast service participants. Participants chose

whether to develop their plan at the hospital with their breast care nurse or either over the

phone, or in person, with a HELPLINE nurse. They were advised that the HELPLINE nurse

would be provided with information about their diagnosis and treatment history prior to the

phone call.

2. The colorectal service recruited to the project from July 2012 to April 2013 (~9 months).

Initially four eligible survivors were flagged by the clinical lead however the inability to

allocate nurse resources to consent these survivors prior to the initial follow-up appointment

impacted on the recruitment of these individuals. The oncology nurse practitioner candidate

was tasked with recruitment, but was unable to recruit any participants for the first five

months of the project due to difficulties capturing survivors at end of treatment and workload

commitments.

In response, the project officer assumed recruitment responsibility and recruitment was

expanded to include the day oncology unit. Capturing survivors involved attending multi-

disciplinary meetings to identify potential recruits; following their treatment trajectory until

they were finished treatment and requesting surgeon permission to approach survivors about

the project.

Patient treatment trajectories included combinations of surgery+/- neo-adjuvant and adjuvant

chemotherapy, and then sometimes further surgery. Three medical record systems were

accessed to obtain this information. Predicting end of treatment was both time-consuming

and more complex than anticipated.


Additional attempts were made to engage the wider medical and surgical team to flag eligible

survivors. In most cases, surgeons and oncologists gave their consent for survivors to be

invited to take part in the project, but were not active in identifying eligible survivors.

Recruitment was ceased at Northern Health in April 2013 due to difficulties delivering the

intervention.

3. Due to low numbers across the project, the project steering committee and the health service

ethics committees approved the expansion of recruitment to enable eligible members of

Cancer Council Victoria support groups and HELPLINE callers to self-refer to the project in

January 2013. This change was made due to the HELPLINE service manager reporting that the

service received a high volume of calls from survivors, living in the north eastern region of

Melbourne, who fit the project eligibility criteria. HELPLINE nurses delivered the entire project

intervention to participants who self-referred. The project officer advertised the project

through Cancer Council Support Groups. This recruitment method was trialled between

February and July 2013 (6 months). Self-referral was selected because there were systemic

barriers that impacted the capacity of acute health services to link survivors with community-

based supports following active treatment.

4. Following low referral numbers through support group and HELPLINE callers, the recruitment

method was again expanded. Key health professionals working for NEMICS region public health

services were asked to encourage eligible survivors to self-refer to the project by providing them

with a flyer about the project. Health professionals who had contact with survivors at end of

treatment (or during the first twelve months of the survivorship period) were selected. This

recruitment strategy was trialled from March 2013 to July 2013 (4 months). The following

health professionals were engaged:

Austin Health

Chemotherapy/Radiotherapy Nurse Coordinator

Prostate Cancer Specialist Nurse

Oncology social work team (4 staff : day oncology, radiotherapy and inpatient units)

Information Lounge manager

Wellness Centre manager

Eastern Health

Breast care nurses (2 sites)

Lymphoedema clinic nurses (2 sites)

Oncology social worker

Urology clinical nurse consultant

Specialist clinics NUMS

Stomal therapist


Northern Health

Social workers (2)

Breast care nurses (2)

Urology clinical nurse consultant

Recruitment targets were adjusted with project steering committee consent and ethics

approval review throughout the project. Targets were adjusted to:

Colorectal service: 10-15 participants

Breast Cancer Transitions Program: 20 participants

Clinical Haematology: 20 participants

Ambulatory Oncology Rehabilitation Program: 20 participants


Table 3.1 Summary of changes made to recruitment

Service Eligibility criteria Recruitment method Recruitment period

and date of change

Breast

service

Widened to include women who

were eligible to attend the

Transitions Program

(not just those who elected to

attend the program)

The Breast care nurse provided a

list of all discharged patients to the

project officer who determined

eligibility and approached survivors

by phone and mail.

May 2012-July 2013

Eligibility widened:

December 2013

Colorectal

service

Eligibility widened to include

survivors who had received

chemotherapy and radiotherapy

1. Surgeons were initially asked to

flag eligible survivors

2. The Clinical Nurse Practitioner

Candidate was asked to recruit

to the project

3. The Project Officer assumed

responsibility for the

identification and recruitment

of survivors (in consultation

with surgeons and oncologists)

July 2012-April 2013

Recruitment

method changes:

1st

change:

September

2013

2nd

change:

December 2013

CCV

HELPLINE

callers and

support

group

members

Eligibility was extended to

include eligible HELPLINE callers

and CCV support group

members

HELPLINE callers: the HELPLINE

nurses identified potential

referrals and support callers to

self-refer to the project.

Support groups: the project

officer presented the project to

support groups and advertised

it through support group

facilitators and newsletters.

January 2013-July

2013

21 nurses

and allied

health

professionals

across

NEMICS

region asked

to identify

eligible

survivors

Eligibility was extended to

survivors of all tumour types

who met the project eligibility

criteria

Targeted health professionals were

provided with information about

the project and flyers to give to

eligible survivors. The flyer

highlighted what the project

offered and advised how to self-

refer.

March 2013-end

July 2013


Changes to the number of health professionals engaged in the project

The project aimed to include as many oncology health professionals as possible but due to resource

limitations, the allied health professionals initially involved in the project were unable to participate

in project delivery. Seven nurses delivered the intervention.

Initially the whole nurse HELPLINE team planned to receive project mentoring and participate in the

delivery of ‘My Health and Wellbeing Plan’ updates. During the time of project implementation, the

HELPLINE service was participating in three projects, and had unexpectedly reduced staffing for an

extended period in 2013. Difficulty contacting survivors and coordinating calls was noted early and a

decision was made for two of the HELPLINE nurses to deliver the project at Cancer Council Victoria.

See Appendix 5 Staff recruitment summary

Changed delivery of ‘My Health and Wellbeing Plan’ within group settings

Individual project plans were developed for each group in collaboration with group clinicians and

facilitators. The project aimed to embed the survivorship intervention within the group programs,

however for both groups this did not occur as the facilitators did not consent to modification of the

group program once the project had commenced. Individual group factors that made it difficult to

embed the intervention within the group programs were as follows:

Administering the project within the Ambulatory Oncology Rehabilitation Program was

complicated by large numbers of ineligible group members who had metastatic disease and

would therefore be ineligible for the project.

For some time, the Breast Cancer Transitions Program had been reviewing its program

structure due to fluctuating recruitment to the group. This impacted on the willingness for

the group facilitators to further consider modification of the content of the group sessions.

3.2 Intended and unintended outcomes (immediate)

Survivors

See Appendix 6 Participant recruitment summary and Appendix 7 Participant sample and flow by

participating service

Information packs provided to 60 participants (2 elected not to receive the pack)

Survivorship care plans developed with 57 participants

One follow-up phone intervention provided for 48 participants

Two follow-up phone interventions provided for 38 participants

Three follow-up phone interventions provided for 22 participants

Most participants developed wellbeing goals and achieved most of their goals

14 participants were linked with community based supports or peer networks (most did not

require linkage)


Health Professionals

Two education sessions were provided for the project team highlighting common survivorship

concerns and skills to support survivor self-management; a half day workshop and a full day

education session. Fifteen nurses, allied health professionals and managers attended the half

day workshop and fifteen nurses and allied health professionals attended the full day

education session.

Two additional education sessions were provided for a wider group of nurses and allied health

professionals working in oncology at Austin Health. These health professionals had less

exposure to survivorship literature and less contact with survivors. Sixty five nurses and allied

health professionals accessed this in-service education.

Mentoring was provided at each site to small groups of nurses except at Eastern Health where

individual mentoring was provided.

Cancer Council Victoria participated in four sessions of mentoring. The HELPLINE

manager participated in the mentoring and actively encouraged nurses to attend.

Austin Health participated in two sessions

Eastern Health participated in three sessions and the project nurse attended external

self-management education

Austin Health and Eastern Health requested fewer mentoring sessions due to limited

resources and the workload impact of the project.

Northern Health did not access mentoring as it was postponed until recruitment and plan

development were underway.

Oncology nurses were provided with information about a range of local community health

services relevant for survivors and they were informed about the ‘Access to Allied

Psychological Services’ scheme.

All project nurses practiced delivering supported self-management interventions. Specific

outcomes will be discussed later in this report.

Organisation/System

The profile of survivorship is increasing across some areas at Austin Health (evidenced by

increasing awareness of survivorship concerns and planning services to address these issues)

due to project activities, increasing research and other local survivorship initiatives that have

emerged over the last two years.

The project delivered increased understanding of systemic barriers and enablers to:

Identification and capture of survivors at end of treatment

Screening survivors at end of treatment to stratify them according to risk of survivorship

period challenges

Prioritising survivorship care against acute healthcare demands

Delivering survivorship interventions within existing resources

Embedding supported self-management interventions


A tool (‘My Health and Wellbeing Plan’ and plan updates) and a pathway for educating the

survivor/family were established and piloted.

A tool and pathway for communicating with the GP were established and piloted.

A linkage between acute healthcare services and Cancer Council Victoria was established and

supported, but the broader relationship between the services was not strengthened. This was

due to the limited numbers of health professionals involved in the project and resource

limitations at health services precluding more frequent meetings of the project nurses from

across the sites.

Despite this some nurses changed their perspectives about the role of partnerships and

lessons were learned about what is required to strengthen partnerships.

A chronic disease management framework targeting survivorship wellbeing was piloted within

acute hospitals and a cancer non-government organisation.

A shift from the treatment of disease to the promotion of wellness was encouraged. The

cancer nurses involved in this project understood that participants needed to define wellness

within the context of their own lives. Participants therefore directed the focus of discussions

about wellness.

3.3 Key lessons from the implementation process

1. Meanings of the term survivorship

The word ‘survivor’ was acceptable to most participants however a number of participants

from the breast service and the rehabilitation group, as well as other cancer consumers

reported negative associations with the term. The Ambulatory Oncology Rehabilitation

Program nurse commented that use of the term survivor had caused distress for people living

with metastatic disease who attended the program. While this term has obvious use for

population research purposes, it may reinforce the two dimensional paradigm of cancer; a

condition that you either ‘survive’ or ‘die’ from. Whilst this project targeted people at end of

treatment, the project nurses agreed that it is equally appropriate to research supported self-

management interventions with people with advanced disease.

“The elements that come up are a lack of clarity around what the acute clinician’s role is and what our [Cancer Council Victoria information and Support Service] role is and where our unique offerings fit in and what benefit it is”

CCV: focus group 3

“I suppose we are used to initiating something and seeing an outcome…and following up further as required, whereas in this situation plans are put in place and someone else follows it up and hopefully it all goes well which is different to what we are used to doing but is what should happen.”

Health service nurse: focus group 2


2. Identifying survivors at end of treatment

Capacity to routinely identify end of treatment varied across the services involved in the

project.

Colorectal service

Challenges capturing colorectal service survivors at end of treatment highlighted the need for

all health professionals to be engaged in this process or for systems to be developed to

support this task. Selling chronic disease management approaches to surgical teams proved

challenging; possibly due to low perceived relevance for their role. Difficulties delivering the

project due to limited nurse resources also impacted the ability to further engage medical and

surgical teams in the project.

Clinical Haematology

The concept of end of treatment was less meaningful for some haematological survivors who

required regular monitoring by the service, whose condition was less predictable, or who had

indolent disease.

Defining survivorship at end of treatment may deprive some haematological survivors of

Defining survivorship at end of treatment may deprive some haematological patients of

chronic disease management support. A definition of survivorship that is not solely paired

with end of treatment may be useful for this cohort. From this larger group of survivors, risk

stratification according to ongoing medical needs, chronic impacts of treatment and other

survivorship impacts may better prioritise people requiring support.

Breast Cancer Transitions Program

The breast care nurse had attempted to set up a process where treatment services flagged

survivors at end of treatment, without success. Survivors who required chemotherapy and/or

radiotherapy as well as surgery were difficult to routinely capture at end of treatment.

“We do not know when [some of] these people are cured. They may finish their treatment or they may go from an acute phase of their treatment to a maintenance phase of their treatment. Our way of thinking is once people are in a relatively stable part of their treatment continuum – that’s the time we approach them and see them as a survivor. So people are not aware whether they are cured or not, but they perhaps have…a little bit less uncertainty than they have had in the previous months”.


“I think we find that we have patients with very indolent disease – you know indolent leukaemia, …who may not require any treatment at this point in time and they will be on a watch and wait strategy and they …are no less hard work than those with acute leukaemia or aggressive lymphoma – they are just as difficult [to provide adequate support for], just as worried as everybody else. “



This was exacerbated by treatment being provided across a number of health services, both

public and private.

Ambulatory Oncology Rehabilitation Service at Eastern Health

A small number of rehabilitation group attendees commented that they may have

participated in the project if it was offered nearer the time of end of treatment but that they

felt it was less relevant by the time they were linked with the rehabilitation program. Some

reported frustration that they were not referred for rehabilitation earlier. The program nurse

reported that treatment summary information sometimes appeared less relevant for

participants who were many months post-treatment.

Project-wide lessons for the identification and capture of survivors:

In the absence of databases to enable capture of survivors at end of treatment, oncologists,

surgeons, radiation oncologists and some specialist nurses are uniquely positioned to identify

and flag this point of transition. Some consultants were particularly supportive and actively

identified and flagged survivors. Sometimes there are no allied health professionals or

specialist nurses in outpatient areas to flag these survivors to, and medical and surgical teams

have multiple competing priorities for their time. Some project nurses reflected that survivors

may not perceive it appropriate to discuss supportive care concerns with doctors and

surgeons, depending on their perception of the doctor’s role.

3. Timeliness of plan development

Many participants were not ready to discuss survivorship at the end of treatment and

identified concerns some months after the end of treatment. Clinical haematology

participants often preferred to develop their plan six months following transition from

intensive treatment. One HELPLINE participant, who reported highly significant impacts from

project participation, commented that she would have been unlikely to engage at end of

treatment:

“A lot of the time the person will not bring that [supportive care survivorship concerns) to the table with the clinician because that is the person who gives them chemotherapy, that is the …surgeon and ‘I won’t mention these other things because that is not their role’”


“There is no database in our service to find people like this and for us trying to identify –their treatment might be quite short or it might go up to 13 or 14 months (just for breast) so I think then you can miss potential people if you do not go back far enough. The short answer is no [it is not simple to capture survivors at end of treatment].”



Individual factors determined readiness to engage in this type of survivorship intervention at end of treatment.

4. Implementing survivorship care plans within existing resources and priorities

Developing the initial survivorship care plan took between ninety minutes and two hours and

cannot be delivered within existing health service or Cancer Council Victoria resources. In

addition to resource constraints, asking acute health service nurses to prioritise survivorship

needs over acute system care coordination/service system demands was problematic. The

project nurses were interested in providing survivorship interventions and had the requisite

skills but had difficulty providing these interventions within existing resources.

The health service nurses and HELPLINE nurses had different views of whether the initial

intervention could be split into two components to share the workload: hospital delivered

treatment summaries and community delivered supportive care intervention and goal setting

facilitation.

Focus group and participant survey feedback demonstrated that this type of intervention can

be well suited to the role of breast-care nurse if sufficient resources can be provided to fund

this work.

The HELPLINE nurses reflected that prior to working for the HELPLINE they would have

believed that access to treatment information would be critical to enable survivorship

planning, but they no longer believed this. They reflected that their role with survivors is

providing supportive care interventions and targeted information, as well as linking survivors

with other relevant community-based services.

‘My Health and Wellbeing Plan’ follow-up interventions did not engender discussions about

treatment (with the exception of some participants with breast cancer who requested general

“I don’t think you can split it [into a separate medical summary and wellbeing plan intervention]. At one point we thought maybe we can split it into two, but it’s that developing that confidence in the person that they feel they can explain to you what’s really going on at the time… the longer that you talk the more that comes out”


“I often try to do that medical bit first …it gives me a …sense…(of) what they know... I agree that if you try and shorten it too much you are going to lose the value …I think for a lot of people it’s an opportunity to actually have a lot of this information at a time that they can actually digest it. They are thinking about a lot of these things but also, make some plans.”


“Personally I think it is a really timely thing to have...for me… quite a few months had passed after my treatment and I was open to things a lot more than I was earlier on and things came up that I would not have expected to come up”.

Participant CCV 1: post-intervention interview


information about hormone therapies). The foci for interactions were supportive care needs,

related information needs and wellbeing goal setting. The HELPLINE nurses commented that

sharing the intervention had some advantages: linking survivors with a community-based

service that can be accessed at any time; avoiding travel back to the treatment centre and

facilitating access to a range of other community based services.

5. Resourcing nurses to strengthen coordinated care

Health service based project nurses had varying knowledge of and level of experience with

referring survivors to community health and rehabilitation services. Anecdotal feedback from

nurses identified that some services (e.g. breast cancer exercise groups, Medicare funded

psychology) were recommended regularly whereas return to work services and community

health allied health services were accessed less frequently. One participant with persistent,

disabling cancer-related fatigue was not linked with community rehabilitation program

assistance for many months, despite receiving the project intervention. Specialist cancer

nurses working for health services may benefit from further education about community

resources and the referral criteria for these services.

6. Integrating chronic disease self-management approaches within acute health services

The nature of acute hospital work, mission, role definition, resources, priorities and spaces all

impacted delivery of self-management survivorship interventions, even where nursing staff

were committed to providing high quality survivorship care. Committing to support survivor

self-management earlier in the treatment journey through different interaction styles (rather

than time consuming interventions) may be more feasible.

7. Preferred location for survivorship interventions

Whilst some participants preferred to receive the intervention at the hospital with a known

health professional; others associated the hospital with unpleasant treatment experiences or

parking difficulties and preferred to receive the plan from a community organisation.

8. Delivery of follow-up phone interventions

The implementation of this project supports feedback from consumers that targeted, specific

information and support needs to be provided when survivors want it, rather than at set

times. The majority of participants were difficult to contact at many planned follow-up phone

call time-points. In some cases this reflected a lack of engagement with the project, although

many participants did not wish to exit the project early; instead opting to re-engage when

they either identified needs or had more time to devote to the project. Table 3.2 contains a

summary of the follow-up calls delivered.


Table 3.2 Summary of follow-up call delivery

9. Implementing the model with the HELPLINE service

Cancer Council Victoria’s vision and model of care supported the self-management facilitation

approach adopted by this project. This chronic disease self-management approach was a

good fit with the skill-set and philosophy of the HELPLINE service and telephone delivered

interventions were acceptable to participants. Engagement with project mentoring was

successful and key nurses actively used Motivational Interviewing skills in interactions with

participants.

Number of follow up phone interventions by recruitment group

Ambulatory Rehabilitation Program

Breast Cancer Transitions Program

Haematology Service

Colorectal Service

Cancer Council Vic self-referrals

Follow up 1 67% (10/15)

96% (26/27)

73% (8/11)

(2/2)

(2/2)

Follow up 2 75% (9/12)

70% (19/27)

64% (7/11)

(1/2)

(2/2)

Follow up 3 33% (4/12)

39% (10/26)

36% (4/11)

(0/2)

(1/2)

“I think that the problem is identifying who they are, but also you might identify …whether ...they are willing to… make some changes and to address [their concerns]…to really engage in the process so…I think you have to have a bit of both.”

HELPLINE nurse: focus group 2

“… I think the responsibility of identifying readiness and ... enhancing self-efficacy and links with the community resources are important in this sort of intervention …and the thing that I noticed… some of the participants completely didn’t get the whole way through was the requirement for them to actively engage rather than be passive recipients and I think that is a bit of a statement about the healthcare sector.”

“The engagement – it required a commitment of time and keeping appointments and things like that and I think if we look across the participants you can really see people disengage or didn’t get it or weren’t in the right place for that. So with the risk stratification, some of it is around …that…, and for us the importance of setting clearly what our capacities are and where our boundaries sit in terms of what we are giving to people –it’s important to be clear about that.”


“I think on a population level –thinking about the most, many, few model – it’s about care pathways and mapping the level of intervention that is appropriate and like [nurse 1] said we need more research to gather the evidence base to understand what is effective at each level and it may be different for different tumour types. “

CCV: focus group 3

“If we can identify them, because it’s a self-management plan…they choose to use it as much as they need to or don’t need to...and …they then know there are other resources available and whether they engage with them further down the track…”



The delivery of outcall self-management interventions did however present some challenges

for the HELPLINE service. These included managing workflow to balance incoming calls with

scheduled outcalls, delivering time consuming interventions within existing resources and

reaching participants during working hours. Managing the transfer of information to GPs,

participants and health services was more time consuming than anticipated. Four of the initial

plans were not received at time of sending (faxes not received or faxed to an incorrect

number), and in rare cases acute health service nurses had difficulty completing plan follow-

up for weeks or months after the initial plan was developed.

Completing an economic analysis of the cost of the intervention and ensuring adequate

resources were provided could have better supported both the HELPLINE service and the

health services to do this work. Timing outcalls to meet individual participant needs could

have assisted engagement and reduced time wasted re-scheduling calls. Providing one initial

outcall intervention and recommending that participants contact the HELPLINE when required

could also have improved efficiency. Greater use of secure electronic methods of information

transfer would also have reduced the time required to complete this intervention.

10. Understanding the role and philosophy of service providers

Whilst specialist cancer nurses exhibited understanding of the role of the HELPLINE, it was

apparent that some clinicians perceived that the HELPLINE offered medical advice and were

reluctant to partner with Cancer Council Victoria. There was not a system-wide understanding

of the actual and potential complementary roles of community-based services in survivorship

care.

11. Fear of recurrence and self-management goal setting

The HELPLINE nurses reported that ‘Scanxiety’ was a frequent precipitator to calls to the

HELPLINE by survivors. They also noted that heightened fear of recurrence associated with

routine scans and follow-up appointments, often impacted capacity to set goals or work

towards wellbeing goals, but that participants re-engaged once they had received their test

results.

The risk of recurrence was initially a concern for one of the health service nurses: “my concern

is that we are setting people up to fail ….they don’t achieve their goals – what does that do to

them psychologically? …”

3.4 Resources/development of resources to support the model

Resources for survivors

1. ‘My Health and Wellbeing Plan’

As referenced earlier in this report, the survivorship care plan developed by Queensland

University of Technology was modified for this project. Changes were made to incorporate

self-management intervention guidance from Macmillan Cancer Support. Following review of


the evidence, the project team collaborated closely with consumers and multi-disciplinary

health professionals to make the following modifications to ‘My Health and Wellbeing Plan’:

the wellbeing focus of the tool was emphasized through inclusion of survivors’ hopes and

personally defined wellbeing goals,

a goal setting template incorporating Motivational Interviewing prompts was added,

Distress Thermometer screening was added to build on existing investment by NEMICS to

increase supportive care screening capacity,

treatment summary information was customised for different tumour groups, and

health literacy editing was completed (consumer review and use of formal editing tool).

Single page ‘My Health and Wellbeing Plan Updates’ were also developed in close consultation

with the HELPLINE service. Updates were completed following each follow-up call.

See Appendix 8 Northern Health Colorectal Service ‘My Health and Wellbeing Plan’

(Acknowledgments to Ms Karen Barclay, colorectal surgeon for assistance creating a

treatment summary that could be incorporated within the ‘My Health and Wellbeing Plan’

template)

See Appendix 9 Austin Health Breast Service ‘My Health and Wellbeing Plan’

(Acknowledgements to Liz Foster, breast care nurse for assistance tailoring the summary for

the breast cancer service)

2. Information pack

An A4 plastic envelope labelled ‘My Health and Wellbeing Plan’ was provided to all

participants. The envelope contained key survivorship information for review prior to

developing the initial plan:

‘Just take it day to day’ DVD developed by the Peter Maccallum Cancer Centre featuring

survivors talking about their experiences post-treatment, and

Cancer Council Victoria developed booklet entitled ‘Living well after cancer. A guide for

cancer survivors, their families and friends’.

The DVD was developed by Peter Mac and the Cancer Council following focus groups with

Australian cancer survivors and health professionals.xvi Survivors express a preference for

specific survivorship resources, rather than general cancer resources and for specific and

targeted information provision. Cancer Council Victoria had trialled various information

packages and advised that people are less likely to read large amounts of information.

Depending on specific participant information needs, additional information was added to the

pack throughout plan development and follow-up.

A completed copy of ‘My Health and Wellbeing Plan’ and ‘My Health and Wellbeing Plan

updates’ and other tailored information relevant to the participant’s concerns/information

needs would be added to the plastic envelope throughout the project.

See Appendix 10 ‘My Health and Wellbeing Plan Update’.


3. Resources for health professionals

Guide to local /regional services

Some of the health service nurses requested easy to access information about local services.

This would assist with linking participants to services that could meet needs raised during plan

development.

Information about community based services such as physiotherapy, occupational therapy,

exercise programs, dietetics, counselling, financial counselling, support groups, fatigue

management, stress management programs, smoking cessation programs and ‘better health

self-management’ groups were provided. Referral instructions (including whether survivors

could self-refer), catchment area and contact details were included in the guides.

3.5 Workforce training and education

Initial training consisted of a workshop outlining common survivorship experiences and self-

management approaches and a one day education session provided by Professor Patsy Yates as

specified earlier in this report.

Self-management education program

Professor Patsy Yates created cancer survivorship self-management training modules that could be

delivered during a one day education session. The modules included:

Module 1: The experience of cancer survivorship

Module 2: Self-management capabilities for health professionals

General patient-centred capabilities:

Assessing self-management capacity

Psychosocial assessment and support

Collaborative care planning

Behaviour change capabilities

Motivational interviewing (introduction)

Collaborative problem definition

Organisational /systems capabilities

Module 3: Implementing self-management approaches in practice

Mentoring program

To support health professionals to utilise self-management support skills and approaches, mentoring

sessions were provided. As stated earlier, a plan was developed to guide project mentoring, using a

Motivational Interviewing framework. The plan drew upon Motivational Interviewing training

workshops, experiential learning applying the model and review of chronic disease self-management

support training literature.

See Appendix 11 Mentoring Plan


Objectives and expected outcomes are summarised in the attached appendix. It was not expected

that nurses would develop expertise in Motivational Interviewing after the mentoring sessions. The

sessions aimed to create reflection about readiness to change using the transtheoretical (stages of

change) model, shift the balance of interactions to one of shared expertise between health

professional and survivor, and assist health professionals to begin to use Motivational Interviewing

skills to strengthen motivation for goal attainment. A maximum of five mentoring sessions was

planned for each site.

3.6 Communication strategies- to date and planned

Table 3.3 Communication plan

Project partner or stakeholder group

Best rep or contact?

Role Resp

How & when Completed

NEMICS (overall project oversight and management)

Program/Project Manager

Project Officer (PO)

Fortnightly meetings and then as required Regular email correspondence

NEMICS (day to day project operations)

Project Officer PM/PO/ Monthly project liaison

Participating Sites Austin Health Eastern Health Northern Health Cancer Council Vic

Manager – Wellness & Supportive Care Service Improvement Facilitators (SIF) Manager Cancer Information & Support Service

PM/PO

Phone/email as required Project team meetings as relevant Regular project team meetings

Project steering committee Committee Chair PO Regular Steering Committee meetings and email/phone communication as required

NEMICS Consumer Participation Committee

Committee Chair PM/PO Via currently scheduled meetings

NEMICS Governance Committee

NEMICS Program Manager

PM Via currently scheduled meetings

Queensland University of Technology

Prof Patsy Yates PO Phone/email as required

Divisions of General Practice PO Phone/email/newsletters

Australian Cancer Survivorship Centre

Manager PM/PO Community of practice updates, Intermediary telephone/email communication/meetings when required


Further dissemination of project lessons will be provided to the above groups following submission

of the final report. Communication methods will include: emails with links to NEMICS website

project summary, presentations at each site, hospital newsletter articles where permitted and some

tailored presentations to participating units.

Project implementation lessons have been disseminated through poster presentations at the 2012

COSA Conference and the 2013 Flinders Cancer Survivorship Conference. A paper outlining

recommendations from this project was presented at the 2014 COSA Care-Coordinators Conference.

3.7 Sustainability strategies

The following tasks were undertaken to support project sustainability:

Project workflow was developed (and reviewed) in consultation with each participating

service and administrative support was provided (preparing fax cover sheets and project

paperwork).

Project education modules and mentoring provided strategies for containing lengthy plan

discussions using Motivational Interviewing strategies. The education also aimed to provide

foundational skills that could be sustained beyond the project.

As difficulties contacting some participants became persistent, the project plan was altered to

enable participants to elect not to receive a second or third follow-up call (to save time

contacting participants who did not want further calls).

The plan to integrate the intervention within existing rehabilitation and transitions programs sought

to reduce the time spent delivering the intervention and enable staff to provide the plan as part of

Dissemination plan A project description and progress bulletins will be communicated to interested professionals, consumers and community members as per table below. Table 3.4 Dissemination plan Project partner or stakeholder group

Person responsible

Role Resp

How Completed

NEMICS Project Manager

PO NEMICS website and newsletter Conferences

Austin Health Chris Scott PO NEMICS website, email and AH news bulletin

Northern Health SIF PO NEMICS website, email and through periodic meetings

Project partner or stakeholder group

Person responsible

Role Resp

How Completed

Eastern Health SIF PO Eastern Health news bulletins and email

Cancer Council Victoria Janet Phillips/ Katherine Lane

PO Cancer Council newsletters and in-services

Australian Cancer Survivorship Centre

Manager PM ACSC website and community of practice

All project partners PO PO Presentations at relevant/appropriate education forums


their routine practice. This would have assisted staff to continue to provide the plans beyond

completion of the project.

In terms of future sustainability, shared care models and activity-based funding mechanisms for

obtaining resources to deliver the project intervention were considered. Other projects are

currently evaluating shared care models and activity based funding rules are yet to be finalised.

Sustainable ways to implement aspects of this intervention are detailed later in this report.


Section 4: Evaluation Results - summary

4.1 Pilot project local evaluation

Figure 4.1 Recruitment and evaluation summary

Demographic data

Demographic data was not collected for survivors who declined to participate. Participants who

withdrew from the project did not differ from other participants in terms of demographic data.

Table 4.1 outlines the demographic data collected at baseline and post-intervention.

Table 4.1 Characteristics of the participants at baseline (n=57) and post-intervention (n=43)

Participants’ baseline characteristics [n (%)]

Participants’ post-intervention

characteristics [n (%)]

Gender Male Female

12 (21.1) 45 (78.9)

8 (18.6) 35 (81.4

Age (years) < 50 years 14 (24.6) 12 (27.9) 51 Years + 43 (75.4) 31 (72.1) RecruitingService Austin breast & haematology services Wantirna oncology rehab program Northern colorectal service CCV HELPLINE service

41 (71.9)

12 (21.1) 2 (3.5) 2 (3.5)

32 (74.4)

9 (20.9)

2 (4.7) ARIA+ Category (from postcode) Major City Inner Regional Outer Regional Unknown

53 (92.9)

3 (5.3) 1 (1.8)

39 (90.7)

2(4.7) 1 (2.3)

1 Living Arrangements Living Alone Living with partner Living with children Living with others Unknown

8 (14.1)

35 (61.4) 10 (17.6)

3 (5.3) 1

5 (11.6)

30 (69.8) 6 (14.0)

2 (2.3)

Total recruited

64

Total completed project

50

Total completed post-evaluation

interview

43

Total withdrew

14

(including 6 for health reasons)

Total completed baseline interview

57


Participants [n (%)] Education Tertiary Qualification Vocational Qualification Completed Year 12 Completed Year 10 Completed Primary School Did not Complete Primary School

27(48.2)

12 (21.4) 2 (3.6)

10 (17.9) 3 (5.4) 2 (3.6)

24 (55.8) 6 (14.0)

1 (2.3) 8 (18.6)

2 (4.7) 2 (4.7)

Current employment status Full-time home duties/carer Retired Employed full-time Employed part-time Unemployed Other Missing

6 (10.7)

13 (23.2) 9 (15.8)

17 (30.3) 5 (8.8)

6 (10.7) 1

6 (14.0)

11 (25.6) 6 (14.0)

13 (30.2) 4 (9.3) 3 (7.0)

ATSI Origin No Yes

57 (100.0)

0 (0.0)

43 (100.0)

0 (0.0) Cancer Site C50 Malignant neoplasm of breast C61 Malignant neoplasm of prostate C73 Malignant neoplasm of thyroid gland C82 Follicular [nodular] non-Hodgkin C83 Diffuse non-Hodgkin lymphoma C90 Multiple myeloma & malignant plasma

cell C92 Myeloid leukaemia . D05 Carcinoma in situ of breast Missing

33 (63.5)

1 (1.9) 1 (1.9) 3 (5.8) 4 (7.7) 4 (7.7)

3 (5.8) 3 (5.8)

5

27 (62.8)

1 (2.3) 1 (2.3)

2 (4.70) 3 (7.0) 4 (9.3)

3 (7.0) 2 (4.7)

Participants were more likely to be female, over 51 years of age and living with others. Women with

breast cancer were the largest group recruited. Most (39 at baseline) of the participants had

completed either tertiary education or post-secondary vocational education. Only 9 (at baseline)

were working full-time prior to the intervention. Despite attempts to recruit CALD survivors, most

participants were either Australian born or had lived most of their life in Australia.

Distress Thermometer and Problem Checklist data

Summary of problems at baseline by recruitment group:

2 participants self-referred to the HELPLINE service

Both indicated problems with housing, insurance, fear, sadness and worry

Distress scores of 2 and 4 respectively at baseline.

Ambulatory Oncology Rehabilitation Program participants

Most commonly reported problems (in order): fatigue, sleep, memory/concentration and

tingling in hands and feet.

Distress thermometer not always fully populated

2 indicated depression

Clinical haematology participants


Reported a wide range of problems across practical, family, emotional and physical

domains.

Approximately 1 in 2 reported fatigue and worry, and 1 in 3 reported

memory/concentration difficulties, nervousness, fears, concerns about return to work

and insurance/finances.

Only 1 participant reported a distress score of 5 or over.

2 indicated depression.

Transitions Breast Cancer Program participants

Reported higher distress scores; 10 out of 27 women screened reported a score of 5 or

over at baseline.

3 scored 8 or more.

Most commonly reported problems (in order) were: worry, fatigue, memory and

concentration and sleep.

7 indicated depression.

Colorectal service participants did not complete distress thermometer screening.

As the problem checklist is not validated for survivorship populations, it is unclear whether some of

the emotional problems reported would have been recorded differently if fear of cancer recurrence

was included in the checklist. Depression was reported by 11 participants at baseline and at least 1

other participant was diagnosed with depression during the project. Figure 4.2 and tables 4.2 and

4.3 outline pre and post-intervention distress scores and problem checklist data.

Figure 4.2 Summary of Version 1 (2011) NCCN Distress Thermometer data

Baseline n=39, Range: 0-10 Follow-up n=30, Range 0-8

It was not expected that this intervention would necessarily impact distress scores or the number of

problems reported. Baseline and follow-up data indicated a large range in distress scores (0-10 and

0-8 respectively). Distress scores were marginally lower at follow-up (mean of 3.97 compared with

0

1

2

3

4

5

Mean Median

4.33

5

3.97 4

Comparison of baseline and follow-up distress scores

Baseline

Follow-up


mean of 4.33) and distress at follow-up tended to be mediated by other life events. In interpreting

these data, it is important to note the following:

Some participants incompletely populated the problem checklist or did not indicate their

distress level. Where problem fields were left blank, data were excluded from analysis.

A number of participants with no/minimal problems or distress at baseline did not require the

second and third follow-up interventions and therefore did not complete follow-up supportive

care screening.

Table 4.2 Summary of Problem Checklist data (baseline n=51, follow-up n=30)

Problem Checklist domain summary scores:

Baseline Follow-up

Domain Mean Median Range Mean Median Range

Practical [6 items] .70 .00 0-3 .87 1.00 0-3

Family [4 items] .52 .00 0-3 .68 .00 0-3

Emotional [6 items] 1.87 1.00 0-6 2.03 2.0 0-6

Physical [21 items] 3.07 2.00 0-11 4.06 4.0 0-15

Spiritual [1 item] .02 .00 0-1 .00 .00 0-0

Total number of problems reported 6.19 5.00 0-18 7.65 7.00 0-22

Table 4.3 Top 10 reported problems at baseline and follow-up

Baseline Item (n) No. reporting problems at baseline n (%)

Follow-up item (n) No. reporting problems at f/up [n (%)]

1. Fatigue 47 30 (63.8) Fatigue 30 18 (60.0)

2. Worry 51 29 (56.9) Worry 29 17 (58.6)

3. Sleep 49 21 (42.9) Sleep 30 15 (50.0)

4. Memory/Concentration 48 20 (41.7) Sadness 29 13 (44.8)

5. Sadness 50 19 (38.0) Memory/Concentration 30 13 (41.9)

6. Fears 50 17 (34.0) Fears 29 11 (37.9)

7. Family Health Issues 26 8 (30.8) Nervousness 29 10 (34.5)

8. Insurance/Financial 49 15 (30.6) Insurance/Financial 29 10 (34.5)

9. Work/School 50 14 (28.0) Skin dry/itchy 30 10 (33.3)

10. Nervousness 49 13 (26.5) Work/School 29 8 (27.6)

The mean number of problems reported at follow-up increased slightly from 6.19 (Median=5.00;

Range=0-18) to 7.65 (Median=7.00; Range=0-22). The top five problems reported were unchanged

at follow-up.

See Appendices 12 and 13 for detailed baseline and follow-up Distress thermometer and Problem

Checklist data


4.2 Aims and objectives

a) Evaluate the impact of the development of ‘My Health and Wellbeing Plan’ on a survivor’s

ability to self-manage their health following completion of their primary cancer treatment.

b) Evaluate the acceptability and usability of the development of ‘My Health and Wellbeing Plan’

by survivors, GPs, health service staff and Victorian Cancer Council staff.

c) Evaluate the effectiveness of the training provided to health service staff on (1) their

awareness of common issues for cancer survivors and their particular needs in the post

treatment phase, and (2) their ability to promote survivor’ self-management.

d) Evaluate the sustainability of this intervention within current resources.

a) The impact of the development of ‘My Health and Wellbeing Plan’ on participants’ ability to

self-manage their health following completion of their primary cancer treatment

The impact of the intervention on self-management abilities was measured using the Health Literacy

Management Scale, Health Education Impact Questionnaire, sub-scales of the Assessment of self-

efficacy in managing cancer symptoms and treatment side-effects and the interviews with

participants conducted at baseline and post-intervention.

Health Literacy Management Scale (HeLMS) status

Baseline

High levels of health literacy were reported at baseline. Mean scores for five out of eight domains

were over 4.5 (out of 5) and all domains except “patient attitudes towards their health’ recorded

mean scores greater than 4. One participant was unable to speak English and two CALD participants

reported difficulties understanding some health-related concepts in English. Participants reported

performing the majority of HeLMS tasks ‘without any difficulty’; however challenges were

experienced in the following areas:

Finding the energy to manage their health (15 ‘with little difficulty’, 24 ‘with some difficulty’, 5

‘very difficult’, 2 ‘unable to do it’)

Making time for things that are good for their health (20 ‘with little difficulty’, 10 ‘with some

difficulty’, 5 ‘very difficult’, 1 ‘unable to do it’)

Paying attention to their health needs (15 ‘with little difficulty’, 13 ‘with some difficulty’, 1

‘very difficult’, 1 ‘unable to do it’)

Changing their lifestyle to improve their health (15 ‘with little difficulty’, 14 ‘with some

difficulty’, 1 ‘very difficult’, 1 ‘unable to do it’)

Paying to see a doctor (9 ‘with little difficulty’, 9 ‘with some difficulty’, 1 ‘very difficult’, 13

‘unable to do it’) Participants who received all of their treatment through the public health

system answered this question hypothetically.

See appendix 14 for baseline Health Literacy Management Scale data


Post-intervention

See Appendix 15 for post-intervention Health Literacy Management Scale data and table 4.4 for

comparison of mean HeLMs domain scores pre and post-intervention.

Table 4.4 Comparison of mean HeLMs domain scores pre (T1) & post-implementation (T2) n=38

HeLMs Domain [number of items in domain]

T1 Domain

score

T2 Domain

Score

Change Score

t df p

Understanding health information [4] 4.87 4.97 -0.10 -1.118 37 0.271

Accessing GP healthcare services [5] 4.87 4.91 -0.04 -0.729 37 0.470

Communication with health professionals [3] 4.64 4.78 -0.14 -1.730 37 0.092

Being proactive [3] 4.49 4.66 -0.17 -1.432 37 0.161

Using health information [4] 4.79 4.84 -0.05 -0.611 37 0.545

Patient attitudes towards health [4] 3.90 4.24 -0.34 -2.901 37 0.006

Social support [4] 4.59 4.70 -0.11 -1.154 37 0.256

Socioeconomic considerations [3] 4.27 4.24 0.03 0.352 37 0.727

Statistically significant change at post-intervention was evident for one out of eight domains;

‘patient attitudes towards their health’. As most participants reported that they managed most

tasks ‘without any difficulty’ (score: 5) at baseline, it was difficult to demonstrate change for most

domains.

Health Education Impact Questionnaire (heiQ) status

Baseline

The heiQ also reflected that the majority of participants had high levels of health literacy at baseline.

All reported confidently communicating with their doctor about their healthcare needs. Most (93%)

reported that their needs were met by available healthcare resources. The majority of respondents

initially reflected that they believed that their health professionals worked in a team but were

unsure whether they were part of the team. One participant remarked, ‘they tell me what to do and

I do it, does that make us a team?’

Despite high overall health literacy, engagement in exercise was variable at baseline:

43.9% reported that they did not walk for fifteen minutes most days of the week.

38.6% reported that they were not physically active for thirty minutes each day (housework

and gardening were included in this item).

A diminished sense of control associated with cancer and uncertainty about what might exacerbate

health problems, was evident at baseline:

35.1% of participants did not know what could trigger their health problem or make it worse

29.8% did not have an understanding of what they could do to control their health problems.

It is unclear to what extent this data reflects the nature of cancer, rather than participants’ health

management capacities.


Despite this, 93% reported that they had a very good idea of how to manage their health problems,

although 21.1% reported that they ‘did not have effective ways to prevent their symptoms from

limiting what they could do in their life’. Most participants (75%) had no need of equipment to help

them to manage their health and answered this question in the negative.

Levels of perceived social support varied markedly:

35.1% indicated that when they felt unwell, their family and carers did not really understand

what they were going through.

24.6% reported that they did not get enough chances to talk about their health problems with

people who understand.

This varied experience of social support is concerning given the numbers of participants who

experienced difficulties managing emotions associated with cancer. The following ongoing

emotional impacts of cancer were reported:

19.3% felt angry when they thought about their health

17.5% felt hopeless and 42.1% felt upset

28.1% reported feeling depressed

66.7% reported that they often worried about their health.

See Appendix 16 for baseline Health Education Impact Questionnaire data and table 4.5 for

comparison of mean heiQ scores pre and post-intervention.

Post-intervention

Table 4.5 Comparison of mean heiQ domain scores pre (T1) and post-implementation (T2)

heiQ Domain [number of items in domain]

T1 Domain

score

T2 Domain

Score

Change Score

t df p

Positive and Active Engagement in Life [5] 3.09 3.29 -0.2 -2.706 40 0.010

Health Directed Behaviour [4] 3.04 3.06 -0.02 -0.227 40 0.822

Skill and Technique Acquisition [5*] 2.96 2.96 0.00 -0.091 40 0.928

Constructive Attitudes and Approaches [5] 3.30 3.41 -0.11 -1.545 40 0.130

Self-Monitoring and Insight [6**] 3.18 3.19 -0.01 -0.158 40 0.876

Health Services Navigation [5] 3.35 3.32 0.03 0.445 40 0.659

Social Integration and Support [5] 3.14 3.20 -0.06 -0.619 40 0.539

Emotional Wellbeing [6] 2.25 2.01 0.24 2.428 40 0.020

*Missing domain item “I have effective skills to help me handle stress" ** Missing domain item “I know when my lifestyle is creating health problems for me”

Statistically significant change in pre-post-intervention scores was evident for 2 out of 8 domains on

the heiQ: ‘positive and active engagement in life’ and ‘emotional wellbeing’. While the absence of a

comparison group means that it is not possible to confirm that this difference was due to the


intervention, qualitative feedback reflected perceived benefits of the intervention for emotional

wellbeing.

Questions about exercise on the heiQ were not always sensitive to changed exercise routines that

participants adopted and this may have impacted the ‘health directed behaviour’ post-intervention

scores. That is, as many participants reported thirty minutes of physical activity daily at baseline due

to housework tasks, new exercise routines implemented by some participants were not identified

using this item. A number of participants completed moderate exercise three times per week at

post-intervention but were unable to report exercising ‘most days’.

See Appendix 17 for post-intervention Health Education Impact Questionnaire data

‘Assessment of self-efficacy in managing cancer symptoms and treatment side effects’

Baseline

At baseline, scores on subscales of the Assessment of self-efficacy in managing cancer symptoms

and treatment side effects indicated that participants were generally confident they had dealt well

with the situations that were assessed. Mean confidence scores varied from 7.67 to 9.11 (out of 10)

for the situations assessed. Scores for 7 out of the 10 areas assessed were greater than 8 out of 10.

Participants reported a range of different information seeking preferences (36.8% seeking ‘a great

deal’ of information and 17.5% not seeking information at all). A mean confidence score of 8.24

indicated that participants were confident they had chosen the approach that worked well for them.

In the qualitative data, a theme emerged with participants who avoided seeking out information

indicating that limiting exposure to information assisted them to manage their anxiety.

Participants (80.7%) reported they needed to significantly ‘re-focus their energy on what they could

achieve’ (scored 3 or 4 out of 4 for frequency of re-focussing energy). The mean confidence score

for this item was 7.67 (scale1-10). 82.4% of participants reported they had ‘kept busy’ (score of 3

or 4 out of 4) and most reported confidence that this approach had worked well for them (Mean:

8.35). In contrast, 35.1% had not continued with their usual social activities but most were confident

they had dealt well with this situation (mean 7.70).

Post-intervention

See Appendices 18 and 19 for baseline and post-intervention self-efficacy scores and table 4.5 for

comparison of self-efficacy sub-scales pre and post-intervention.

Table 4.6 Comparison of self-efficacy sub-scales scores pre and post-implementation (n=41)

T1 mean score

T2 mean Score

Change Score

t df p

Frequency of activity completion 33.20

32.34

0.85 1.127 40 0.267

Confidence with completing activity 82.41

85.56 -3.15 -1.164 40 0.251


There were no statistically significant changes noted on the subscales of the Assessment of self-

efficacy in managing cancer symptoms and cancer treatment side-effects, although modest

increases in mean confidence scores were recorded for all activities at post-intervention. This

outcome may have been impacted by high overall baseline confidence scores and the tendency for

participants experiencing greater emotional challenges to remain in the project at post-intervention.

Qualitative data from some participants indicated they perceived that the project had supported

their confidence for specific tasks like commencing exercise or addressing relationship concerns.

While this single group design means that results of this evaluation need to be considered with

caution, it is noted that mean scores for frequency of performing the following activities were

slightly lower (non-significant difference) at post-intervention:

refocussing their energy on what they could achieve

actively seeking information about their illness and treatment, and

asking their doctor questions about their illness or treatment.

A number of participants commented that their need to engage in these activities had reduced.

Minimal increases in activity levels were reported for other activities at post-intervention.

Questionnaire feedback

Impact of the intervention on knowledge about the impacts of cancer/cancer treatments and the

likelihood of recurrence

Participant interview feedback

At baseline interview, 90.9% of participants reported that they had ‘already been educated about

the impact of cancer, its treatment and the likelihood of recurrence’. Despite this, 52.7% reported

that they ‘still had questions about the impact of cancer, its treatment and the likelihood of

recurrence’.

At post-intervention 69.8% indicated that they had received information about the impact of cancer,

cancer treatments and the likelihood of recurrence through developing their ‘My Health and

Wellbeing Plan. In addition, 41.9% of participants ‘still had questions about the impact of cancer, its

treatment and the likelihood of recurrence’, although it was noted that their questions usually

related to whether they would experience recurrence (rather than percentage risk of recurrence).

Nurses reported that some participants engaged well with this part of the plan, some indicated that

they no longer required this information and some preferred not to discuss risk of recurrence. The

HELPLINE nurses reported that a number of participants with breast cancer sought information

about managing the effects of hormone therapy during follow-up interventions.

See Appendices 20 and 21 for pre-and post-intervention participant interview summaries.


Impact on health behaviours

In interpreting the following data, it is important to note that it reflects the response of the forty

three participants who completed the post-evaluation interview and not those who withdrew from

follow-up and evaluation.

At baseline, 83.6% of participants reported that they had started doing things to improve their

health since they were diagnosed with cancer and 90.9% thought that developing a plan and goals

would help them to manage their health.

At post-intervention 86% believed that ‘My Health and Wellbeing Plan’ had impacted their ability to

manage their health and 88.4% developed goals or strategies during ‘My Health and Wellbeing plan’

sessions. Most (86%) responded that developing goals and strategies helped them to return to

activities that were important to them or to take up new activities and 79.1% thought that they

developed new knowledge, skills or strengths while using ‘My Health and Wellbeing Plan’.

Goal attainment summary

Two data sources were used to evaluate goal attainment: ‘My Health and Wellbeing Plan Updates’

(summaries completed at each follow-up call) and the post-intervention interview. Participant

reports of goal attainment were not always consistent when these two data sources were

compared.

Measurement of goal attainment was further complicated by the following factors:

The evaluation focussed on increased self-management abilities and personal wellbeing rather

than goal attainment alone. Self-report was used as the measure of goal attainment.

Different results may have been found if more reliable outcome measures were employed to

measure exercise, diet and other goal areas.

The extent to which ‘SMART’ (specific, measurable, achievable, realistic and time limited)

goals were developed varied. HELPLINE nurses reported that facilitating SMART goals was

easier when interactions were face to face and the participant could see the goal setting

template. Most participants with exercise goals reported how they would achieve their goal

of improving fitness (e.g. gym twice a week and daily walks) but rarely stated how they would

know their goals had been achieved. Dietary goals in particular tended to lack clear outcome

measures.

Some participants’ goals changed during the project timeframe and others engaged in goal

setting separately to the project that they later attributed to the project.

Table 4.7 summarises key health behaviour changes attributed to the intervention at post-

intervention interview.


Table 4.7 Key health behaviour changes attributed to ‘My Health and Wellbeing Plan ‘(n=43) at

post-intervention interview

No. reporting change [n ]

Exercise 28

Diet 19

Alcohol consumption 8

Smoking 3

Exercise

While few participants developed SMART exercise goals, most indicated how they would work

towards fitness. E.g. attend gym class three times per week. While 28 reported at post-intervention

interview that they made changes to the amount of exercise they participated in, ‘My Health and

Wellbeing Plan Updates’ indicated the following:

Exercise goals (29 goals formulated, 3 not achieved due to illness, 2 discontinued exercise

following stressor, 2 not reported)

16/21 reported achieving regular ‘moderate intensity exercise’ (gym programs, bike riding,

boxing, swimming, running, fast walking)

5/8 reported achieving regular ‘low intensity exercise’ (walking, yoga, pilates)

The inconsistency between participant report at post-intervention interview and ‘My Health and

Wellbeing Plan Updates’ may indicate that some participants commenced/re-commenced exercising

after their second follow-up call. It is also possible that exercise gains were not always documented

during follow-up interventions as the emphasis of wellbeing plans often changed over time.

Diet

Whilst 19 participants reported making changes to their diet as a result of the plan at post-

intervention interview, ‘My Health and Wellbeing Plan Update’ data indicated the following:

“It was difficult to get people to be specific and to move beyond the…concerns and hopes area

to the goal setting. For some people that process happened over a couple of interactions and

some people did it less formally so it was like they had their action plan or goals in mind and it

never eventuated to being formally recorded. The face to face ones…being able to use the

goal setting template helped people visualise what was otherwise a little bit abstract.” HELPLINE nurse: focus group 3 feedback

“Stated goals are really the starting point that can go anywhere and achieving them is, … it’s

not so much about the outcome, as the process and so the conversation tends to be more

around …what might be working well and what other things have emerged …so … there

hasn’t been a sense of achievement or failure in terms of goals set…the conversation has

been about how are they going and what was useful, where do you think you are heading

next and what might help you with that?”

HELPLINE nurse: focus group 2 feedback


Dietary goals (18 goals formulated, 5/8 achieved ‘eating healthier’ goal (more fruit and

vegetables), 1/1 achieved weight gain goal, 2/9 achieved weight loss goals (5 not reported (1

of these referred to dietitian), 2 did not maintain gains)

Greater definition of dietary goals and strategies to support change may have assisted more

participants to make changes to their diet. Again, interpretation of these data is impacted by the

absence of ‘SMART’ goals and the reliance on self-report.

Alcohol consumption

While 8 participants reported reducing alcohol consumption as a result of the plan at post-

intervention interview, ‘My Health and Wellbeing Plan Update’ data reflected the following:

Alcohol consumption goals (5 goals formulated, (3/5 achieved their goal, 1 relapsed following

a stressor and 1 was not reported).

Most participants had either ceased drinking alcohol completely or were drinking minimal

amounts prior to project participation.

It may be that inconsistencies with these data reflect that participants attributed changes to the

project that were made independently of the project.

Smoking

At post-intervention interview, 3 participants indicated that they had ceased/reduced smoking due

to participation in the project. ‘My Health and Wellbeing Plan Update’ data indicated the following:

5 known smokers in the project (3 smoking cessation goals formulated, 1 achieved, 1 stopped

smoking but relapsed (but was smoking less) and 1 was not reported).

Other goals

Themes for wellbeing goals included:

Holiday planning (18 goals formulated, 14 achieved, 3 not achieved due to poor health, 1 not

reported)

Leisure activities (13 goals formulated, 8 achieved, 1 partially achieved, 4 not reported)

Better manage challenging emotions (including fear of cancer recurrence) (11 goals

formulated, 7 achieved, 4 not reported –of these, 1 seeing psychiatrist, 1 referred for

counselling, 1 meditating, 1 multiple stressors)

Return to work/increase work hours (11 goals formulated, 6 achieved/partially achieved

(working part time or studying for new career), 1 not achieved, 4 not reported).

Increase socialisation (6 goals formulated, 4 achieved, 1 not reported, 1 not achieved)

Increase family care responsibilities (3 goals formulated, 3 achieved)

Address relationship issue (7 goals formulated, 7 achieved)

Optimise memory/concentration function (use strategies) (1 goal formulated,1 achieved)

Manage housework (3 goals formulated, none reported)

Change work/life balance(reduce work hours) (5 goals formulated, 3 achieved, 1 partially

achieved, 1 not reported)


Impact summary

Participant responses to the intervention and the amount of engagement varied markedly. Four

main themes were identified with regard to engagement:

Engaging well with the supportive care screening, wellbeing goal setting and treatment

summary information

Engaging with the supportive care screening and wellbeing goal setting

Valuing information and support but not developing/actioning goals

Not engaging with any aspect of the intervention.

The perceived impact of the intervention on self-management varied. Nurses reported that

survivors noted that it was a ‘different kind of conversation’ to the ones they had during hospital

treatment. The conversation provided a ‘framework’ that enabled them to focus on what was

important to them and what they could do to improve their health. A participant in the Ambulatory

Oncology Rehabilitation Program also reported great benefit from the intervention, although it was

difficult to separate out the benefits of the rehabilitation program from the project for some of

these participants.

Around 14% reported that the intervention had ‘not significantly impacted their ability to manage

their health’ (score of 1 or 2 out of 4 for impact). Some participants reported that they would have

achieved their goals without the project intervention and others were not interested in formulating

goals. Some found the plan useful initially but had difficulties with ongoing motivation for goal

attainment. Readiness for lifestyle change varied.

One oncology nurse reflected that people who were interested in working towards wellbeing usually

engaged well and found the project ‘affirming’, whereas those who had difficulty actively working

towards maintaining their health were more difficult to engage. One participant had a number of

“I know I would not have made the change (without assistance). You know I was obese… I

had not exercised for years, I did not think that I could exercise and I think that going through

the …[oncology rehab program] and what we are doing now… it made me realise that I can

change, I can do this and from that I had the confidence to go looking for a personal trainer

that was right for me and I’m sure it would not have happened if I had done nothing apart

from having treatment for my cancer….I’ve now lost 15 kilos and I’m walking over 2 km per

day…it is fabulous and I feel fabulous too….I would not …if I hadn’t gone to the [rehab

program] and then been picked up by your program…the whole circle has helped me greatly.”

Participant E14: post-intervention interview

“Not so much the plan [assisted me to achieve goals] only because being honest personal

discipline does that… I don’t really believe that that helped (the plan).”

Participant H4: post-intervention interview

“It’s worked for me. You know it’s got me thinking about the cancer, everything that I want to

change… lifestyle, from that it’s been slow but I’m just seeing the benefits now…I went to a

50th on Saturday night and didn’t drink or smoke”



chronic conditions, appeared poorly motivated to work towards self-management and did not return

any follow-up calls.

Clinical Haematology participants often received contact with their treating team at intervals during

the project timeframe and reported that they felt well supported and well informed by the hospital

service. While two of these participants identified highly significant impacts, other participants may

have had less need of this type of survivorship care plan at transition from active treatment to

ongoing review status.

Health service nurses reported that the section of the plan that contained information about’ signs

and symptoms to report’ assisted participants to feel more confident to manage their health.

Two participants who experienced cancer recurrence elected to call the HELPLINE service to

continue wellbeing goal setting external to the project. While most participants (88.4%) engaged

well with the goal setting process, it would seem likely that many would have actioned return to

work and holiday goals without the project intervention.

Some participants expressed high levels of satisfaction with their exercise levels despite limited/no

moderate level exercise activity. It is unclear whether an intervention that gave greater attention to

late effects information may have impacted the level of exercise that these participants aimed for

(some of these participants were older and had other health conditions).

Response to/impact of HELPLINE follow-up

35 participants (81.4%) reported that the HELPLINE service contact was useful to them, and a

further 6 (14.0%) answered “neutral”. The remaining participants declined to answer this

question.

33 participants (76.7%) reported that the HELPLINE called them at 4 weeks, 4 months and 8

months, 5 participants (11.6%) disagreed with this statement, 5 did not respond to this

question.

39 participants (90.7%) reported that the cancer council called at a time that was convenient

for them. No response was recorded for a further 4 participants.

30 participants (69.7%) felt the contact from the Cancer Council helped to keep them

motivated to work on their wellbeing, 5 (11.6%) neither agreed nor disagreed, and 5 (11.6%)

disagreed with this statement. 3 participants declined to answer this question.

Participants seeking support with managing anxiety/depression or other challenging emotions

reported valuing the follow-up support provided.

“I think it does [the plan does help people to feel more confident to manage their health] … the

things to look out for...” that’s really good” –the feedback about just that front page alone [the

list of signs and symptoms to report]…. They have hopes and goals but that front page seems

to stimulate more confidence that anything else”.



Linkage with community services

Fifteen participants (34.9%) asked to be linked to community services when devising their ‘My

Health and Wellbeing Plan’, and of these, 14 participants reported that these linkages were made.

Services included: smoking cessation service, psychology, dietitian, financial counselling services etc.

One participant indicated that she would have benefitted from referral to community rehabilitation

for fatigue but this referral was not completed.

Beliefs about GP follow-up

At baseline, most participants reported that they had good access to their GP (89.1%) and they

believed their GP would re-engage a specialist if required (96.4%), but only 60% thought that their

GP had the skill to manage their follow-up care. At post-intervention, thirty-five participants (81.4%)

felt confident with GP follow-up; an increase of 21.4% compared with baseline data. A small number

of participants commented that they would only be confident with their GP managing their follow-

up if they (the participant) initiated the need for review/surveillance or referral back to the

treatment centre. Some found it difficult to see the same GP when they required appointments.

b) The acceptability and usability of ‘My Health and Wellbeing Plan’

Survivors

Whilst feedback about the usefulness of the plan varied, participants found the plan

acceptable. Two participants who declined the project indicated that information about signs

of cancer recurrence (included in the plan) would not be acceptable to them. No participants

suggested changes to the plan although one participant suggested that a diary to track

progress with goals would be helpful.

A HELPLINE nurse commented that the usability of the goal setting template was reduced for

participants when the initial plan was developed over the telephone.

Health professionals

Focus group feedback indicated that the amount of time taken to populate ‘My Health and

Wellbeing Plan’ was not acceptable for the nurses involved in the project; however the content of

the plans was acceptable. The nurses did not think that any component of the plan should be

removed despite concerns about resources required to complete them. Two nurses commented

that information about survivors’ hopes was best accessed through the goal setting process, rather

than asked about directly.

“Well I guess that one of the major things that was really brought to my attention was that

perhaps I was a little bit depressed which had not been picked up and…so…I was able to go

and see someone about that…also…I had a business and sort of lost motivation and…she (the

HELPLINE nurse) was very helpful in that regard.”

Participant CCV 1: post-intervention interview


GPs

The project sought to create a pathway linking the GP, health service and HELPLINE service. Despite

20/22 GPs indicating that the plan would be useful to them in their practice, only 6 GPs mentioned

the plan to the participant. It is unknown whether the 35 GPs who did not return surveys found the

plans acceptable and usable.

Surveys were returned from 22/57 GPs who received copies of ‘My Health and Wellbeing Plan’

21/22 supported the concept of self-management plans for cancer survivors

20/22 believed that the plans would be useful to them in their practice

21/22 believed the plans would be useful to survivors in managing their health needs

14/22 GPs thought the plan implementation would be more effective if it was produced as

part of a discharge summary, although one GP reflected that it is “probably better not to

include plan in discharge summary -better able to be formulated when patient has

recovered”.

Only 4/22 GPs wanted an online version of the plan.

See Appendix 22 GP feedback summary

c) The effectiveness of the training provided to health service staff

Awareness of common issues facing survivors post-treatment

Focus groups and informal discussion indicated that the cancer nurses who participated in the

project already had a sound awareness of survivorship period challenges prior to the project

commencing and considered the longer term impacts of cancer and specific cancer treatments.

Psycho-social factors were believed to be important predictors of survivorship coping and the nurses

agreed that disease and treatment related factors alone were insufficient to define risk. Some

nurses were already providing group based or individual support to survivors, although most of the

nurses primarily worked with people during the treatment phase.

Ability to promote participant self-management

Ability to support participant self-management was assessed using a survey questionnaire pre and

post the initial education session. Tables 4.8 and 4.9 outline the professional backgrounds of

training participants and years of experience working in healthcare.

Pre-training


Table 4.8 Staff pre-training evaluation attendance summary (conducted on 29/02/2012)

Profession of training participants (n=12) (3 participants did not complete evaluation forms)

Profession Participants [n (%)]

Oncology nurse 9 (75)

Social worker 1 (8.3)

Other 2 (16.7)

Table 4.9 Years of experience working in health care (n=12)

Years of experience Participants [n (%)]

0-9 1 (8.3)

10-19 2 (16.7)

20-29 6 (50)

30-39 3 (25)

The mean number of years that participants had worked in health care was 22.58, SD 8.34, with a

range of 6-35 years and a median of 23.5.

Prior to the initial training, the 12 health professional participants who attended were asked to rate

how often they used key self-management support capabilities, on a score of 1-4, where 1 indicated

‘not at all’ and 4 signified ‘a great deal’. Results were as follows:

All health professionals scored 3 out of 4 for use of evidence based practice.

Most scored 3 out of 4 for: psychological assessment/support (10 participants), cultural

awareness skills (10 participants), use of peer support (9 participants) and collaborative care

planning (9 participants).

Other skills that were scored as frequently used (score 3 out of 4) were: structured problem

solving (8 participants), goal setting and action planning (8 participants) and assessment of

health risk factors (7 participants).

Whilst 9 participants reported using collaborative care planning, only 6 used collaborative problem

definition prior to training. A score of 3 out of 4 was recorded by 4 participants for use of

Motivational Interviewing skills. Confidence in skills tended to be associated with frequency of use

of the particular skill. The lowest mean confidence scores recorded at baseline were 4.33 for

Motivational Interviewing, 4.64 for organisational change techniques, 5.73 for collaborative problem

definition and 5.92 for health promotion approaches. When asked what they wanted to learn from

training, Motivational interviewing skills, self-management support skills and communication skills

were the most requested topics.

See Appendices 23, 24 and 25 for more detail.


Post-training

Table 4.91 summarises mean confidence scores pre and post-training and table 4.92 outlines skills

developed. Following the initial training, mean confidence scores increased modestly, but not

significantly for most skill areas. Mean confidence increases for Motivational interviewing skills,

organisational change techniques and assessment of self-management capacity were statistically

significant. Only 4 participants indicated that they were interested in receiving further training and

mentoring. Most of the participants who expressed interest in mentoring worked for the HELPLINE

service.

See Appendices 26 and 27 for further information.

Table 4.91 Comparison of mean confidence scores pre and post training (n=12)

Strategy t (df=11) p

Health promotion approaches .000 1.000

Assessment of health risk factors -.505 .631

Communication skills -.679 .522

Assessment of self-management capacity -2.763 .033

Collaborative care planning .000 1.000

Use of peer support .000 1.000

Cultural awareness -.548 .604

Psychological assessment and support .179 .864

Motivational interviewing -3.464 .013

Strategy t (df=11) p

Collaborative problem definition -1.183 .281

Goal setting and action planning -1.449 .197

Structured problem solving -1.225 .267

Working in multidisciplinary teams -1.000 .356

Organisational change techniques -2.121 .078

Use of evidence based practice -1.162 .289


Table 4.92 New skills developed by participants as result of the training

Strategy Number of participants reporting skill development

Motivational interviewing 6

Assessment skills 3

Developing care plans 2

Goal setting 1

Reflective listening 1

Better understanding 1

Consolidating skills 1

Overall impact of project on abilities to promote participant self-management

The small number of health professionals involved in this evaluation means that it is not possible to

make definitive conclusions regarding changes in use of self management support strategies.

Despite this limitation, all nurses recorded high levels of confidence in of their ability to promote

self-management with participants (mean confidence levels 8.17, range: 7-9, at final interview). One

health service nurse reported a change in the way he conceptualised his role in supporting survivors

to problem solve their difficulties.

Some nurses did not complete pre-education surveys so it was difficult to compare data for the

same participants. The health service nurses spent most of their time providing ‘usual care’ within a

system that does not see supported self-management as its mission and this may also help explain

the findings. All nurses, but particularly those working for acute health services, required additional

resources to participate in all project activities but these resources were largely unable to be

provided due to difficulties backfilling specialist nursing positions.

One nurse thought that ‘My Health and Wellbeing Plan’ should be part of routine care (with

appropriate resources allocated) and commented in the final survey that “she did not think that the

project increased her knowledge but she thought that it improved the experience [of transition] for

participants who did the plan”. Another nurse recorded scores of 3/4 for frequency of use in all skill

areas in the final survey and reported a confidence level of 10 for 11/15 skill areas. She reported

“I always work on the premise that people come to me because they want me to fix something

for them and they come to me, ask me a question and I will sort it out. [reflecting on changed

approach for this project] …through this process trying to get them to …identify what their

issue (is) and how they are going to deal with it, they often already know the answers to the

problems that they face but actually getting them to…do something about it is the challenge.”



that she has increased her use of “reflective practice’ and that she ‘now asks questions with more of

a self-management focus”. She also engages survivors more in the generation of solutions to

problems.

The HELPLINE nurses who received the highest level of internal organisational support to deliver

supported self-management interventions and participate in project mentoring, reported a

frequency of 3/4 for using most of the skills and most confidence levels were 7 or above. Focus

group feedback from the HELPLINE nurses demonstrated high use of self-management support skills:

It was not possible to compare final survey results of mean scores for self-management support

capabilities with pre-education survey results due to the small sample that completed the final

survey.

d) The sustainability of this intervention

This intervention cannot be sustained within existing resources. Both acute health service sites and

the HELPLINE service found it difficult to allocate 1.5 to 2 hours for creation of ‘My Health and

Wellbeing Plans’. The inability to embed the intervention within the rehabilitation and breast cancer

group programs impacted upon sustainability. All nurses involved in the project reported that

increased resources are required to deliver this type of intervention.

“I think …I’m more inclined to… be attuned to change talk and ambivalence – the concept of

rolling with resistance rather than bashing up against it and asking people what something

would look like or would involve –getting them to visualise what an ideal thing might be and

what would need to happen for that to eventuate was –they were different things. …I think

nurses …I’m generalising but nurses are action oriented problem solvers so the concept of

enabling and saying I’m not the expert here….but it’s really about picking the person. That’s

something about Motivational Interviewing, it’s really not a tool you use for everybody all of

the time but it is in your grab bag of skills that used at the right time can be really helpful for

you.”


“I felt it [the mentoring] broadened my skill set –enabling versus doing for, so I guess it helped

me tune in a bit more to what it was that people were expressing and then thinking what is the

best way to assist this person and maybe it’s doing that more Motivational interviewing

(approach) than information provision”


“Yes the project did alter my workforce role and shifted the focus of interactions from

information provision to collaboration and support. It allowed me to work autonomously and

expand my skill set in a way that enhanced my other client interactions.”

HELPLINE nurse: final survey feedback


Follow-up phone interventions took up to one hour to complete and much time was required for

scheduling and re-scheduling of calls when participants were unavailable at appointment times.

Information exchange tasks completed at each follow-up intervention were also more time-

consuming than anticipated. See chapter 5 for discussion of sustainability.

e) Ability to link survivors with community based resources

Most participants were referred to services according to their needs and receptivity to a referral

being made. Some nurses liaised with services they had not accessed previously in response to

needs identified during ‘My Health and Wellbeing Plan’ interventions. Return to work services were

identified as an area that some nurses required more information about. Knowledge of available

community health and rehabilitation services and confidence in their safety and efficacy for cancer

survivors were identified as areas for improvement.

4.3 Issues and challenges with the evaluation

1. The timing of post-intervention participant interviews was impacted by challenges delivering

the intervention at the planned time-points of one month, four months and eight months.

Many participants were difficult to contact or needed to re-schedule appointments multiple

times during the project. For most, the evaluation interview (initially planned at six months

post-intervention) was scheduled two months after the second follow-up call from Cancer

Council Victoria.

2. Delays completing post-intervention interviews may have impacted participant recall of some

aspects of the intervention. For example some participants, who were offered the option of

having a significant other present when they developed their plan, had no recall of this option

at the time of the interview. Recall of the information pack contents also varied.

3. The single group design of this evaluation means that it is not possible to directly attribute

changes observed to the intervention and the small sample size for both participants and

nurses also limits the conclusions that can be drawn regarding any pre-post-intervention

differences.

“When patients say they want to...exercise (for example)… I’ve found I’m needing a little bit

more information about what’s around, what’s available locally… learning more about those

resources that are out there in the community… that helps to guide patients”.

“Especially for our myeloma patients because...some of them have had significant fractures and

injury and they are really scared to just see their GP …worried they might do something

wrong…we need to go back to our physio and find about ways to provide that sort of

assistance…those patients could actually access their community physiotherapist…providing

patients with information to reassure them that yes you can actually do that and it’s not going

to cause harm...”



4. Some participants from the Eastern Health Ambulatory Oncology Rehabilitation Program

appeared to have difficulty distinguishing the project intervention from the rehabilitation

group benefits during their post-evaluation interview.

4.4 Overall assessment of pilot model of care

Was risk stratification useful/successful?

This project adopted a risk stratified approach but did not employ holistic screening to identify

suitable participants. Supportive care screening was embedded within the intervention rather than

used to determine who required the intervention. Given that most cancer survivors enjoy good

quality of life post-treatment, screening prior to the intervention to risk stratify survivors may have

enabled the intervention to be better targeted and impacted project outcomes.

The intervention appeared to be well targeted for participants who achieved their wellbeing goals

and reported benefit from the project. Most who remained engaged with the project, developed

and actioned personally defined wellbeing goals and reported that the HELPLINE calls assisted their

motivation to achieve and maintain gains. Some reported that they did not believe they would have

achieved their wellbeing goals without the project intervention, although others indicated that they

would have made changes without the intervention.

For a number of participants, the intervention was not well targeted. Some were already effectively

self-managing and others were not engaged with working towards improved wellbeing. Some

indicated no problems/distress at baseline.

Whilst the project protocol specified that people with acute major mental illness were not eligible

for the project, a number of participants either reported, or were diagnosed with, depression during

the project timeframe. Some also experienced challenges managing anxiety. A number of these

participants reported significant benefit from the intervention. These findings suggest that people

with depression/anxiety should not be denied this type of intervention.

Current systemic challenges to identifying, capturing and screening survivors at end of treatment

impact the ability to direct resources to those most likely to benefit from supported self-

management interventions. This is particularly an issue for survivors who receive treatment across

multiple services. More research is required to identify who benefits most from supported self-

management interventions.

“I think that depression often comes as a part (of life after breast cancer) but they can still

make use of this plan and maybe even talk about some of the issues.”



Were survivorship care plans useful/successful?

Quantitative evaluation of outcomes of ‘My Health and Wellbeing Plan’ found few statistically

significant differences. However, qualitative evaluation revealed a range of responses to the

intervention.

Most participants who were poorly engaged with follow-up calls did not complete the post-

intervention interview, so there is a lack of qualitative feedback about what did not work for people

and how the intervention could be improved.

Was shared care with general practice useful/successful?

This project tested a shared care approach with the HELPLINE service. Partnership with general

practice was not the aim of the project, although GPs were a key audience for ‘My Health and

Wellbeing Plans’. Few GPs discussed ‘My Health and Wellbeing Plan’ with participants.

The project did not facilitate GP engagement in survivorship care planning. Please refer above

sections detailing the acceptability and usability of the plans for GPs and participants’ beliefs about

GP follow-up.

The initial project plan included scoping of an e-version of ‘My Health and Wellbeing Plan’. GP

survey results indicated that only 4/22 GPs wanted to receive an on-line version of the plan. GPs

across the NEMICS region are currently transitioning to e-health technologies. In terms of scoping

future development of an e-version of survivorship care plans, embedding the plan within the

Personally Controlled Electronic Health Record (PCEHR) is likely to be the most cost effective and

“…I just think it was a terrific thing to do. For me it clarified exactly what I wanted to do next within

the next 12 months and being able to talk it through with someone like [Haematology Nurse] who

has that information… they can sort of temper it if you are trying to go overboard or for someone

who may not…be as positive or as confident about how they are coping in the situation...it can

offer suggestions and advice and I just think having her as a sounding board and a bit of a model

there. …of well this is the sort of thing we could put into it [the plan], I think was just brilliant. I

think it was a brilliant idea.”


“I’d say a big difference yes (ceased smoking and drinking)….it [‘My Health and Wellbeing Plan’] has

[impacted the amount of exercise I do (daily 5km walk/run and weights program)]…I’ve changed

my diet…the whole lot has changed. ”


“This was the best thing I have ever done…It was gold standard. The form…sometimes you are just

blocked and it focuses you…you have got a framework. Keep it running!”

Participant T28: post-intervention interview


efficient option. Existing templates could be used to aid sharing of key survivorship plan

information.

Shared Care with Cancer Council Victoria Nurse HELPLINE Service

The HELPLINE service committed significant resources to this project and successfully engaged with

providing supported self-management interventions using a Motivational Interviewing framework.

The HELPLINE service continues to express a strong interest in improving linkages with hospitals for

people with cancer; particularly at end of treatment.

Whilst some health service nurses reported learning new information about the function of the

HELPLINE nurses and were interested in improving linkages for survivors, the limited number of

health professionals involved in the project and resource constraints made it difficult to strengthen

relationships more broadly between the health services and Cancer Council Victoria.

It was anticipated that sharing of treatment summary information would be critical for effective

partnering with the HELPLINE Service. The HELPLINE nurses reported that participants rarely sought

to discuss specific disease and treatment information with them. The lack of interest in discussing

treatment summary information may be related to the high health literacy levels of the participants

or may reflect the difference in roles between hospital-based cancer nurses and HELPLINE nurses

and also the different perceptions of these services that survivors may have.


Section 5: Sustainability considerations

5.1 What aspects of the model are sustainable?

The following aspects of the model are sustainable within existing resources:

The identification and capture of survivors from Clinical Haematology and the Ambulatory

Oncology Rehabilitation Programs

The delivery of Motivational Interviewing interventions and survivor initiated goal setting

within existing rehabilitation and support programs

Provision of supportive care screening for risk stratified rehabilitation group attendees and

haematology survivors at end of treatment.

Delivery of supported self-management interventions for callers who initiate calls to the

HELPLINE.

The following aspects of the model are not sustainable within existing resources:

The identification and capture of survivors from the breast service and colorectal service (this

could be achieved if oncologists, radiation oncologists and surgeons were engaged to flag

survivors at end of treatment and they had someone to refer to)

Delivery of survivorship care plans that take 1.5-2 hours to deliver, unless resources can be

obtained through philanthropic funding/cost-shifting mechanisms.

Provision of 3 follow-up phone interventions at set times over 8 months

Provision of regular ‘My Health and Wellbeing Plan’ updates to GPs.

5.2 What is required to ensure sustainability?

Improved systems (electronic or human communication systems) to aid capture of survivors at

end of treatment

Capacity to electronically populate a brief cancer treatment summary

Designated health service roles tasked with reviewing identified survivors and risk stratifying

them according to need. This could enable identification of survivors who require more

intensive individually based follow-up. Late-effects clinics and specialist nurses may have

some capacity to provide shorter end of treatment screening, education and referral

interventions to a minority of survivors.

Greater use of group programs and technology to deliver supported self-management

interventions targeting key areas of need. For example: fatigue management, managing fear

of cancer recurrence, managing finances and managing exercise and diet to optimise health

after cancer etc.

Improved linkages with cancer NGOS and community based health providers who are better

supported to provide survivorship self-management interventions.

Shared care approaches with GPs that reduce specialist follow-up appointments for lower risk

survivors could enable health service resources to be re-directed to nursing/allied health

services for end of treatment screening, self-management support and care coordination.


Section 6: Potential scope for extension/spread of survivorship care

6.1 How could this work be spread?

1. Other survivor populations

All of the project nurses agreed that supported self-management and wellbeing goal

setting could be implemented with people with metastatic disease. As this model was

derived from other chronic disease groups, it is suitable for use with people who are

experiencing serious ongoing health impacts.

Macmillan’s 2013 report, ‘Cured but at what cost’ has highlighted people who receive

large, diffuse doses of chest and pelvic radiotherapy or extensive pelvic surgery as at risk

groups who may benefit from improved end of treatment screening and provision of

supported self-management interventions. Integrating supported self-management

interventions with late effects education is an area for further exploration.

2. Introducing supported self-management at diagnosis

Supported self-management approaches applied earlier during treatment could better

support transition off treatment. Subtle changes of approach to information delivery and

utilising key strategies (drawing on patients’ mastery of past events, affirming positive

efforts/strengths, using patient-generated goals, engaging patients in problem definition and

problem solving) could be adopted throughout the treatment continuum if organisational

vision supported this change.

3. Engaging more services

Wellbeing goal setting using a Motivational Interviewing model could be integrated into

existing group education and rehabilitation interventions across Victoria. Programs like

the ‘Life after Cancer’ education program may be well suited to integrating this approach.

Oncology rehabilitation programs are already implementing this type of intervention and

information delivery style into their education sessions. One oncology rehabilitation

service is piloting the goal setting template developed for this project in their

rehabilitation program. It may be possible to provide targeted telephone follow-up for

risk assessed survivors who take part in these education and rehabilitation programs,

although consideration of the resources required and how to target the intervention

would be required.

Community health services, private community-based allied health and community

rehabilitation services already provide chronic disease self-management services to

people living with a range of chronic conditions. There is scope to increase the profile of

survivorship challenges at these services and engage with community based allied health

to ‘get cancer on the map’ with other chronic conditions. This will become increasingly

important as the number of survivors continues to grow.


6.2 What is the work flow/key steps you would recommend for others

wishing to adopt your model?

In light of the delivery challenges experienced by this project, it is not recommended that others

attempt to implement the same intervention without significant additional resources at both the

health service and cancer NGO sites.

Key things to consider:

Scoping ways to identify survivors from key target groups is an important preliminary step.

Taking a re-design approach and focussing on reorienting the acute cancer service system to

include the identification of survivorship risks and linking survivors with supports could better

support this type of intervention. Clearly defined and communicated roles in survivorship

care and quality frameworks that support this work would better enable delivery of

survivorship interventions within acute health environments. Review of the allocation of

nursing and allied health resources in outpatient areas is also recommended.

The timing and number of telephone follow-up interventions provided should be decided by

the survivor. Providing one initial contact and then encouraging survivors to call the service

when they need support may be more sustainable than delivering three follow-up calls.

For providers of information to survivors, consideration of the goal of the information

provision, its timeliness and whether information delivery style supports survivor self-

management could assist with providing more effective evidence based support. In order to

embed supported self-management within survivorship care plan delivery, the service needs

to balance provision of information with interactions structured to strengthen survivor self-

efficacy, engaging the survivor in goal setting and problem solving survivorship challenges.xvii


Section 7: Next steps for project locally – next 2 years

Discussions have commenced with Cancer Council Victoria to explore how project lessons could

inform education programs and internet modules provided for cancer survivors. The education

team at Cancer Council Victoria have attended Motivational Interviewing training and are

considering applying this model to their ’Life after cancer’ education programs. ‘Life after cancer’

education programs are provided to survivors across Victoria.

Feedback about project lessons with a focus on challenges identifying and capturing survivors at end

of treatment, common survivorship difficulties identified, areas for goal development and

implications for acute services will be provided to medical, nursing and allied health staff across

NEMICS health services.

2014 Survivorship planning

1. Consultations across NEMICS health services are planned to define the role of acute health

services in the provision of survivorship care. This work will inform planning for future

survivorship interventions once state-wide directions for survivorship care are in place.

In addition to this, two surveys are in process:

2. A survey has been circulated to allied health professionals working across acute cancer

services. It aims to collect and analyse the following information:

Allied health professionals’ perceptions of ‘gaps’ in the system; patient groups who miss

out on referrals to rehabilitation/community based allied health

Allied health professionals’ perceptions of the safety and efficacy of community based

allied health and rehabilitation interventions for people with cancer

Knowledge of available services and ease of referral

Interest in updating knowledge about relevant rehabilitation and community services for

people with cancer

Perceived relevance of Better health self-management groups for people with cancer or a

history of cancer

Acute allied health professionals working across two health services have completed 11 surveys at

the time of writing.

3. A survey has been circulated to allied health professionals working for community health and

public inpatient and community rehabilitation services in the NEMICS region. It aims to

collect and analyse the following information:

Anecdotal report of numbers of referrals of people with cancer or a history of cancer

Knowledge of common survivorship concerns and key late and long term effects

Confidence assessing and treating cancer survivors compared with people with other

chronic conditions

Adequacy of referral information received

Perceived effectiveness of referral pathways


Interest in learning about common late effects and long term effects and evidence-based

treatments to address key survivorship concerns

A total of 147 surveys have been collected and the four primary care partnership organisations in

the NEMICS region have been engaged to assist in planning service improvements.

A community forum is planned for April 2014 to highlight the survey results, discuss implications for

coordinated care and introduce key evidence about the chronic impacts of some types of cancer and

cancer treatments. Further targeted education and service coordination improvements will then be

planned based on feedback provided and consumer consultation.


Section 8: Overview of project impact/Conclusion

8.1 Impact/value

This project’s impact on individual participants was variable; participants, who engaged with follow-

up calls, developed and attained most of their wellbeing goals particularly in their increased level

and frequency of exercise.

Participants who did not make changes to their lifestyle indicated valuing the prompts to think about

their wellbeing that the project and follow-up calls provided. They indicated that the intervention

provided a different type of conversation and gave them a framework to think about their life after

cancer. A number of participants took action to better manage relationship and psychological

challenges associated with life after cancer. The intervention appeared to be less effective in

supporting weight loss goals.

Project nurses reported higher levels of confidence in promoting self-management at post-

intervention, however statistically significant improvements in skill usage and confidence were

unable to be demonstrated. The HELPLINE and Ambulatory Oncology Rehabilitation Program nurses

reported developing new self-management support skills. Some HELPLINE nurses became skilled at

applying Motivational Interviewing skills (and philosophy) to their practice and identified potential to

apply this approach with selected general HELPLINE callers. There is scope for cancer non-

government organisations to integrate supported self-management within their model of care.

8.2 Key lessons

Supported self-management approaches are valuable for some survivors but improved risk

stratification is required to enable better targeting of interventions.

Work is required to enable system-wide identification and capture of survivors at the end of

treatment.

Individual preferences for the timing and location of survivorship support vary.

The provision of comprehensive wellness planning early in the survivorship phase, reduced

the number of follow-up interventions required.

This project supports evidence that links supported self-management interventions with the

ability for people to modify their lifestyle. Continuing to provide information and advice alone

(e.g. telling survivors to adopt healthy behaviours) is not supported by evidence.

Survivors can benefit from linkage with the HELPLINE service at end of treatment to provide

prompt information, self-management support and referral advice to address emerging

survivorship concerns.

Cancer nurses are well placed to develop the skills required to provide supported self-

management interventions, however the acute health service context can impact the extent

to which nurses are supported to transition to supported self-management approaches.


8.3 Policy and system level questions that have been raised by this

project

How do we prioritise who receives intervention during survivorship, and what types of

interventions are most effective with which groups?

How can survivors receive routine risk screening at end of treatment within existing

resources?

How best can we create a system that gives survivors choices in terms of the timing and

location of survivorship support interventions?

What is the role of acute health services in survivorship care?

Are acute healthcare settings ready for wellness and health promoting interventions?

How can acute health services best prioritise their resources to provide comprehensive cancer

care throughout treatment and beyond?

How can partnerships between health services, cancer NGOs and community-based health

services best be supported?

How can clearer roles and shared understandings of different services contribution to

survivorship care best be established?

What can be learned from service coordination initiatives implemented with chronic

conditions like diabetes and chronic obstructive airways disease?

8.4 Top 10 tips

1. Survivors need to be able to access support and information at varied time-points after

treatment. They need to know what they might expect and how/where they can find

assistance if required. Support needs to be accessible at health services and at community

locations (community rehabilitation services, cancer non-government organisations,

community health services and Medicare-funded private allied health and psychology

services).

2. Providing individualised, tailored and timely support is more likely to be effective than

delivering follow-up at set time-points.

3. Whilst targeted medical information can be critical, this project suggests that some survivors

engage more with supportive care oriented interventions than medical treatment summaries.

4. Capacity to identify and capture survivors at end of treatment cannot be assumed. Provision

of system-wide survivorship support will be predicated on the ability to routinely identify

survivors at transition from care. Further work is required to build health services’ capacity to

capture survivors at end of treatment.

5. Risk stratifying survivors is critical for identifying those survivors who require support and

those who require intervention. Predicting the risk of survivorship period difficulties requires

more than consideration of cancer diagnosis and treatments received; individual factors

including competing life stressors, family and work demands, other health issues (including


mental health conditions), financial and other resources available and level of social support

will impact a persons capacity to self-manage during this period.

6. Improved targeting of survivorship support interventions is important for evaluating their

effectiveness. Survivors with depression and anxiety can benefit from supported self-

management interventions.

7. .

8. The needs of survivors with lower levels of health literacy or from CALD / ATSI backgrounds

need to be considered when developing survivorship strategies .

9. Improving linkages between acute health services, cancer NGOs and other community based

health providers could assist survivors to access supported self-management interventions

following treatment.

10. Prioritising survivorship needs within acute health services is difficult. Clearer role delineation

in survivorship care supported by allocated resources, quality frameworks and key

performance indicators could facilitate provision of survivorship support within acute health

services.

11. Selling self-management support interventions to health services can be challenging. More

evidence is needed to build a strong case for changing the current model of cancer care

provision.



Section 9: Recommendations

Identifying survivors & risk stratification

1. Engaging surgeons, oncologists and radiation oncologists is important to enable the

identification of survivors at the end of treatment. Further integration of electronic patient

record systems could also support the identification of survivors.

2. Supportive care screening at end of treatment could assist with risk stratification survivors for

ongoing support. Developing screening tools validated for the survivor population would assist

this process.

3. More research is needed to better understand the needs of survivors with lower levels of

health literacy (including CALD survivors) so appropriate interventions can be created and

marketed to these survivors

Service focus and role delineation

4. Acute oncology service resources have been allocated to provide treatment to control/cure

cancer or to palliate. Re-configuring services to enable specialist nurse/allied health

screening, risk stratification and referral at end of treatment is recommended. Shared care

models with GPs may provide a mechanism for this in some areas. Identifying survivorship

issues and linking survivors with appropriate services needs to be recognised by acute

oncology quality plans and key performance indicators in order for cancer professionals to be

supported to do this work.

5. Establishing agreed state-wide or regional roles in providing healthcare for cancer survivors

across acute health services, cancer non-government organisations, rehabilitation and

community health services could support improved care coordination at end of treatment and

build capacity to service increasing needs. With increasing numbers of older people

developing cancer, improved pathways to community health and rehabilitation services will

be required.

Linking health service and community-based care for survivors

6. Lessons from the creation of integrated chronic disease management services for other health

conditions could help inform the development and implementation of pathways for cancer

survivors who require ongoing support. Creating clear indicators for rehabilitation and efficient

pathways may also support improved linkages for survivors.

7. Increasing knowledge of, and confidence in, existing community based rehabilitation and allied

health services, health self-management groups and coaching services could improve care

coordination for eligible survivors.

8. Educating rehabilitation and community based allied health services about common

survivorship challenges (including long term and late effects of treatments) and evidence


based interventions could provide a more sustainable mechanism for delivering self-

management support interventions for people with cancer.

Supporting survivors through partnerships with cancer NGOs

9. Cancer NGO’s are well placed to provide supported self-management interventions for cancer

survivors. The HELPLINE service adapted to skilfully delivering self-management interventions

as the approach aligned well with their organisational vision and mission. Cancer NGOs access

survivors through a range of services including: support groups, telephone and internet

services and education programs. Improving linkages between acute health services and

cancer NGOs could support survivors to access support at any point along the journey.

Clearer understanding of the complementary roles of hospitals, cancer NGOs and other

community based services in survivorship care; acknowledgement that some survivors’ needs

cannot be met by the acute system alone and trust in the quality of care provided at NGO’s is

required.

For future partnerships, it is important to consider that independent organisations are subject

to resource changes and changing priorities and directions that can impact partnership

sustainability.

Facilitating health promoting behaviours

10. Cancer is not always a ‘teachable moment’.xviii Telling survivors to modify their lifestyle to help

manage long term effects and mitigate late effects is less likely to facilitate behaviour change

than applying evidence based self-management support approaches. Educating acute health

services about this evidence is important for supporting survivors’ self-efficacy and creating

linkages to support health promotion behaviour change.

11. The goal setting template and the Motivational Interviewing framework used in this pilot

project could be adapted for implementation within rehabilitation groups, survivorship apps

and education groups.

12. Follow-up telephone support appears to support motivation for goal attainment and was

valued highly by some survivors. Knowing the number and timing of follow-up calls to

maximise survivor engagement needs to be directed by the survivor. Tailored approaches to

telephone follow-up and provision of calls after hours may be more deliverable and

sustainable but further research is needed to evaluate this.

13. Survivors with co-morbidities, mental health issues and advanced disease could benefit from

supported self-management interventions. Further research piloting supported self-

management with people with these issues is recommended.


Section 11: List of Attachments/appendices

Appendix 1 NEMICS ‘My Health and Wellbeing Plan’

Appendix 2 Governance Committee Membership and Terms of Reference

Appendix 3 Project Steering Committee Terms of Reference

Appendix 4 Outcome measures summary

Appendix 5 Staff recruitment summary

Appendix 6 Participant recruitment summary

Appendix 7 Sample and flow summary by participating service

Appendix 8 Northern Health Colorectal Service ‘My Health and Wellbeing Plan’

Appendix 9 ‘My Health and Wellbeing Plan’ (Breast Cancer Transitions version)

Appendix 10 ‘My Health and Wellbeing Plan Update’

Appendix 11 Mentoring plan

Appendix 12 Baseline NCCN Distress Thermometer and Problem Checklist data

Appendix 13 Follow-up NCCN Distress Thermometer and Problem Checklist data

Appendix 14 Baseline health literacy management scale data

Appendix 15 Post-intervention health literacy management scale data

Appendix 16 Baseline health education impact questionnaire data

Appendix 17 Post-intervention health education impact questionnaire data

Appendix 18 Baseline assessment of self-efficacy in managing cancer symptoms and treatment

side-effects data

Appendix 19 Post-intervention assessment of self-efficacy in managing cancer symptoms and

treatment side-effects data

Appendix 20 Baseline interview questionnaire data

Appendix 21 Post-intervention interview questionnaire data

Appendix 22 GP feedback summary

Appendix 23 Pre-training frequency of use of self-management support strategies

Appendix 24 Pre-training confidence using self-management support strategies

Appendix 25 Pre-training survey-strategies used and learning needs

Appendix 26 Staff post-training evaluation

Appendix 27 Staff final survey evaluation-frequency of use of skills

Appendix 28 Financial acquittal

Appendix 29 Paragraph summaries


Authorship

This report was written by Paula Howell, Katherine Simons and Melissa Shand. The evaluation and

impact sections of this report were co-authored by Professor Patsy Yates of Queensland University

of Technology.

Certifications


Appendix 1 My Health and Wellbeing Plan

My Health and Wellbeing Plan

Name: Attach id:

Date: Preferred contact number:

This plan is designed to help you to be well by:

helping you manage your health right now and

giving you a record about your cancer and treatment This is your plan and guide to:

symptoms to watch for and

steps you can take to be well and stay healthy The information in the plan will help you know when you need to see someone about your health, who to see and what to ask.

My recommended after care: Any persistent change should always be reported to your doctor

Report these signs and symptoms if they don’t go away:

My Health Care Provider contact/s:


Recommended health check schedule

Things to do How often Who will organise? When?


My concerns

Optional Prompts (Circle if relevant)

Practical Concerns: (managing dai ly tasks, work, chi ld care, f inances,

leisure, housing, holiday planning etc)

Family and Social Concerns: (relationships, family health concerns and

abil ity to have children)

Emotional Concerns: (worry, fears, depression, sadness, loss of interest in

usual act ivit ies)

Physical Concerns: (pain, bone health, fat igue, altered bowel habit , s leep

disturbance, sexual issues, other)

Health Behaviour Concerns: (diet, exercise, smoking, alcohol etc.)

Access to services

Other


My concerns

My hopes


Social ise more, join a group, take up an interest , reinvest energy in a relationship, feel f itter, travel, work, volunteer etc


Information and Recommendations



My Plan

What do I want to achieve?

How will I get there? Who /what will help me to do this?

How long do I expect it to take?

How ready do I feel to get started with this? Rating 1-10

How important is this to me?

My Health and Wellbeing Plan completed by:

Signature: Date:


My Diagnosis Information:

Cancer Diagnosis: Date of Diagnosis: Diagnostic tests summary (dates and results):

My Treatment Information (including dates, locations):

Surgery: Chemotherapy: Radiation: Other:

A copy of this Health and Wellbeing Plan has been sent to these other members of your health team:

GP Fax:

Cancer Council Victoria Helpline Nurse Fax: 9635 5290

Hospital medical record

My Health and Wellbeing Plan treatment summary completed with

Name:

Position

Signature:

Date:

Hospital: Fax:

Significant other/ carer present: YES NO

Interpreter YES NO If applicable state language: Disclaimer: It is important to realise that many management questions have not been comprehensively addressed in randomised trials and guideline base recommendations cannot always account for individual variation among patients. These recommendations are not intended to supplant physician judgement with respect to particular patients or special clinical situations and cannot be considered inclusive of all proper methods of care or exclusive of other treatments reasonable directed at obtaining the same results. Accordingly we consider adherence to these recommendations to be voluntary, with the ultimate determination regarding their application to be made by the physician in light of each patient’s individual circumstances.


Appendix 2 Governance committee membership and terms of reference

Name Discipline / Role on Governance Committee Health Service

Mr Alan Lilly Chair and Health Service CEO Eastern Health

Dr Brendan Murphy Health Service CEO and Host Agency Austin Health

Ms Robynne Cooke Health Service CEO (Acting) Northern Health

Dr Linda Mellors Executive Director - Mercy Hospital for Women

Mercy Health

Dr Phil Parente Acting Director Cancer Services Eastern Health

Prof Chris Hamilton Director Radiotherapy Austin Health

A/Prof Shane White Director Oncology and

Chair, NEMICS Clinical Reference Group

Northern Health

A/Prof David Allen Chief Medical Officer Mercy Health

Ms Kate Whyman Program Director - Specialist Medicine Eastern Health

Mr Jason Payne Director, Cancer, Spinal and Out-patients CSU Austin Health

Ms Maree Glynn Operations Director - Medical Northern Health

Ms Alison Patrick Executive Director of Nursing Mercy Health

Ms Jacky Close Executive Officer Outer East Community Support Alliance

Ms Janine Rossely Consumer

Chair, NEMICS Consumer Reference Group

Ms Anne Kay Consumer

A/Prof Paul Mitchell Director, NEMICS Ex-officio

Ms Kathy Simons Manager, NEMICS Ex-officio

Governance Committee Terms of Reference

Role of committee

Provide leadership, support for and oversight of the development and ongoing operations of

NEMICS (including directorate, stakeholder groups, reference groups and network).


Establish and annually review governance group membership, meeting and decision making

processes to effectively support the ICS health services to collaborate to achieve improved cancer

outcomes for the populations they serve.

Promote and facilitate a sustainable model for collaboration and partnerships between health

services, clinicians, consumers, the community, primary and private sector, stakeholders and

Department of Health (DH) to achieve policy targets and ICS strategic goals.

Lead, endorse, monitor, support and evaluate the development, implementation and monitoring of

a strategic plan, and associated communication strategy, for the ICS to achieve the relevant cancer

reform priorities and the ICS strategic goals within a sustainable approach.

Appoint, support, provide advice to and oversee the program manager and director in their role of

facilitating the implementation of the ICS strategic and operational plans and achievement of the

relevant priorities. Conduct annual review the program manager’s and director’s performance with

all participating agencies.

Approve and monitor the NEMICS budget.

Ensure a strategy for engaging with consumers and community groups to enable their participation

in achieving the ICS strategic goals.

Role statements for members

In the spirit of cooperation and collaboration, each member will be respectful of the philosophy,

priorities, knowledge and experience of other members and stakeholder groups.

Health service members

Health service members are drawn from senior executive, operational and clinical personnel of

participating organisations and stakeholders.

Membership of the Committee is non-representational; rather members are committed to work

together to improve the quality of care and quality of life outcomes for people who are affected by

cancer, through service system collaboration and reform.

Members are expected to be active ambassadors for role and work of the North Eastern Melbourne

Integrated Cancer Service.

Members are expected to communicate the direction and work of the North Eastern Melbourne

Integrated Cancer Service within their organisations and other networks.

Consumer members

Consumer members will have developed knowledge from their experience and are able to represent

the views of others. This experience does not have to be as a patient. The diagnosis of cancer

affects more than the individual, it affects the family, carers, loved ones, neighbours and the


community. But out of that comes a desire to better the experience of others who are affected by

cancer or may be affected in the future.

They will have links back into the community and community organisations so that they are a two-

way conduit, disseminating information back into the community but bringing the issues of that

community to their involvement.

Members are participants in their own right, not constrained in their view or representing other

organisations to which they may belong.

Membership

Membership of the NEMICS Governance Committee is drawn from the network partners Chief Executive Officer

From each of the network partners: Northern Health, Austin Health, Mercy Hospital for Women Eastern Health

Operational Manager at executive level Senior medical consultant in oncology – clinical leader Chair of the Clinical Reference Group If not already a member Consumers, including the Chair of the Consumer Reference Group

Two positions

Representatives primary care By invitation NEMICS Medical Director In attendance NEMICS Program Manager

Chair

The Chair is appointed from within the membership. The term of the Chair is for three years with a

maximum reappointment of one term.

Reporting

The Committee is accountable to the Department of Health, Cancer Strategy & Development and

copies of all meeting papers are provided to them as part of the reporting requirements of the

Integrated Cancer Services.

Meetings

There are six meetings per year, including a planning meeting

Subcommittees

Finance

Remuneration


Glossary

The following definitions are drawn from the Cancer Australia – Cancer Clinical Networks Glossary

2011

Cancer consumer

A person affected by cancer as a patient, survivor, carer or family member; or a consumer

organisation representing the views of consumers.

Clinical leader

A practicing clinician who has the respect of their peers and drives or influences service or policy

improvement through effective leadership to champion excellence in care delivery.

Managed clinical networks

Linked groups of clinicians and organisations from primary, secondary, and tertiary care working in a

coordinated manner to ensure equitable provision of high quality effective services.

Network partners

The organisations or services that have partnered with the lead agency responsible for a network in

each jurisdiction.

Network members

All clinicians, services and consumers in a cancer network region who are engaged with a network

program.

Review

The terms of reference will be reviewed annually by the membership.

The terms of reference to be endorsed by the NEMICS Governance Committee

The membership will review its effectiveness annually.

Revised: March 2013 by Governance Committee membership

Endorsed: 9 May 2013 by the Governance Committee

Next review: March 2014


Appendix 3 Project Steering Committee Terms of Reference

Background

The Department of Health (DH) offered funding to pilot patient-centred models of care, targeted at

the end of initial treatment.

NEMICS successfully applied for a DH grant to implement Health & Wellbeing Plans for identified

groups of survivors at three sites. This intervention has the following broad aims -


more independently and competently manage their post treatment health

optimise their sense of well-being in the context of their disease history


in the post treatment phase

3. Train cancer professionals to promote increased survivor self-management.

Objectives

1. Oversee the implementation of the Moving Forward with Confidence project.

2. Provide support and guidance to the project team.

3. Monitor project progress, ensuring the project remains within scope, meets budget and

timelines and is of a high quality.

4. Communicate project progress to:


Victorian Cancer Survivorship Projects Committee

Participating health services

Term of Office

Until project completion in September 2013

Meetings

1 hour meeting to be scheduled at 9.30 a.m. on Tuesday mornings

Meetings to occur 3 monthly

Teleconference available if needed


Membership

Program Manager NEMICS

Co-applicant or delegate from each participating service; Northern Health, Austin Health,

Eastern Health and Cancer Council Victoria

Consumers x2

Directorate SIF with survivorship portfolio

Reporting



Appendix 4 Description of project outcome measures

Health Education Impact Questionnaire Version 3

(heiQTM: Osborne, Elsworth & Whitfield, 2007).

The HeiQ was designed to assess the quality and impact of patient education and self-management

interventions across a range of chronic conditions. It is a robust, psychometrically sound tool,

consisting of 40 questions covering 8 domains. 1. Health directed behaviour; 2. Positive and active

engagement in life; 3. Emotional Wellbeing; 4. Self-monitoring and insight; 5.Constructive attitudes

and approaches 6. Skill and technique acquisition; 7. Social integration and support; and 8. Health

service navigation.xix Maunsell et al (2011) adapted and validated the tool to be used as a measure

of empowerment in the cancer context.xx

Health Literacy Management Scale Version 1.1

(HeLMsTM: Jordan, Buchbinder & Osborne, 2009).

The scale contains 29 items across 8 domains. Five domains pertain to individual abilities: 1.

Understanding health information; 2. Accessing GP healthcare service; 3. Communication with

health professionals; 4. Proactive about getting further care; 5. Using health information. Three

domains focus on broader factors: 6. Receptivity to improving one’s health; 7. Social support and 8.

Economic barriers to care. Assessment of the difficulty level individuals experience when seeking,

understanding and using health information is performed on a 5-point Likert scale, with 1 = unable

to do and 5 = without any difficulty. Scores are averaged for each domain and scores of 3 or less

means that the person may need help in a particular area. xxi

Assessment of self-efficacy in managing cancer symptoms and treatment side effects

(Campbell, Yates, Clinton, Mirolo, & Sellick, 1998).

This scale was developed following five focus groups with Australian cancer patients receiving

chemotherapy or radiotherapy.xxii Relevant subscales were applied for this project.


Appendix 5 Staff recruitment summary

Total staff approached

24

No. of staff participating in project

13

No. of managers on steering committee

4

1 Surgeon,

1 HIS /Admin

No. of nurses delivering H & W Plans

7

No. not participating after initial set-up

11

(Physio, Ex Physiologist, Psychologist X2, Nurse X6, Social Worker)


Appendix 6 Participant recruitment summary

No. approached 131

Total recruited 64

Total consented

74 (10 did not return forms)

No. completed H & W Plans

57

No. completed 1st f-u call

48

No. completed 2nd f-u Intervention

38

Completed 3rd f-u call

22

Not completed 3rd f -u call

28 3rd f-u call not required

21

No. unable to contact

4

Ca recurrence 2

other health issue 1

No. not completed 2nd f-u call

15

Call not required

9

Not able to contact

4

Call not received when scheduled -

declined further calls

2

No. not completed 1st f-u call

9

Withdrew for other medical reasons

3

Unable to contact

3

Too busy to participate

1

No. did not complete H & W Plan

7


2

No, withdrew (2 too busy, 1 major

stressor)

3

No. nurse unable to deliver plan during

timeframe

1

No. left rehab grp prior to plan

1

Total declined

57

No. sent information unable to contact

19


Appendix 7 Participant sample and flow summary by participating health service Clinical Haematology

Total approached

27

Total recruited

12

No. completed

H & W Plans

11

No. completed 1stF-U call

8

No. completed 2nd F-U call

7

No. completed 3rd F-U call

4, 1 pending

No. not completed 3rd F-U call

6

3rd F-U call not required

4


2

No. not completed 2nd F-U call

4 (2 unable to contact, 2 not needed)

No. not completed 1st F-U call

3 (3 unable to be contacted)

No. did not complete initial H & W Plan

1 (unable to contact)

Total consented but forms not returned

2

Total declined

13


Appendix 7 Participant sample and flow summary by participating health service Ambulatory Oncology Rehabilitation Program

Total approached

30

Total recruited

16

No. completed

H & W Plans

15

No. completed 1st F-U call

10

No. 2nd F-U call not completed

2 (2 not needed)


9, 1 pending


4, 2 pending?

No. not completed 3rd

F-U call

4

3rd F-U call not required

3 (not needed) 1 W/D other health

issue

No. not completed 1st f-u call

5 (2 for other health reasons,2 -unable to contact, 1 too busy)


1 (left rehab grp)

Total consent forms not returned

14


Appendix 7 Participant sample and flow summary by participating health service Breast Cancer Transitions Program

Total approached

61

Total recruited 30

No. completed H & W Plans

27


26

No. not completed 2nd F-U call 8

2nd F-U call not required

5

unable to be contacted

2

Call not provided when scheduled

1


19

No. completed 3rdF-U call

10

No. not completed 3rd F-U call

16

3rd F-U call not

required 12

No. ca recurrence 2

Unable to contact

2

No. not completed 1st F-U call 1 can't be contacted


3 (2 too busy, 1 cannot

be contacted)

Total consented forms not returned

8

23 declined

Sent project info-unable to contact

19


Appendix 7 Participant sample and flow summary by participating health service Colorectal Service

Total approached

11

Total recruited

4

No. completed

H & W Plans

2


2


1


0 (1 did not need 3rd call)

No. not completed 2nd F-U call

1 (pt exited study due to delays)


2 (1 inadequate nurse time to schedule, 1 major life/health

stressor)

Total declined

7


Appendix 7 Participant sample and flow summary by participating health service Cancer Council Victoria recruits

Total self-referred

2

No. completed H& W Plans

2


2


2


1 (1 not needed)


AFFIX PATIENT IDENTIFICATION LABEL HERE

U.R. NUMBER: ___________________________________________

SURNAME: _____________________________________________

GIVEN NAME: ___________________________________________

DATE OF BIRTH: _______/_______/_______ SEX: _____________

Appendix 8 My Health and Wellbeing Plan (Colorectal version)

My Health and Wellbeing Plan

Name: Preferred contact ph:

Date:

This plan is designed to help you to be well by:


giving you a record about your cancer and treatment

This is your plan and guide to:


steps you can take to be well and stay healthy

The information in the plan will help you know when you need to see someone about your health, who to see and what to ask.

My recommended aftercare:

Any persistent change should always be reported to your doctor


Things to do How often Who will organise?

When?

Your healthcare provider contact/s:

|FN

H2521

00ä~



U.R. NUMBER: ___________________________________________

SURNAME: _____________________________________________

GIVEN NAME: ___________________________________________

DATE OF BIRTH: _______/_______/_______ SEX: _____________

My concerns

Optional prompts (circle if relevant)

Practical Concerns: (managing daily tasks, work, child care, finances, leisure, housing, holiday planning)

Family and Social Concerns: (relationships, family health concerns and ability to have children)

Emotional Concerns: (worry, fears, depression, sadness, loss of interest in usual activities)

Physical Concerns: (pain, menopausal symptoms, bone health, altered bowel habit, fatigue, sleep

disturbance, sexual issues, other)


Access to services

Other: (memory / concentration changes etc)

My hopes

Optional prompts (circle if relevant)

(Socialise more, join a group, take up an interest, re-invest energy in a relationship etc)



U.R. NUMBER: ___________________________________________

SURNAME: _____________________________________________

GIVEN NAME: ___________________________________________

DATE OF BIRTH: _______/_______/_______ SEX: _____________

Information and Recommendations:

Your healthcare provider contact/s:

|FN

H2521

00ä~



U.R. NUMBER: ___________________________________________

SURNAME: _____________________________________________

GIVEN NAME: ___________________________________________

DATE OF BIRTH: _______/_______/_______ SEX: _____________

My Plan

What do I want to achieve? How will I get there? Who/what will help me to do this?


How ready do I feel to get started with this?

Rating 1-10


Health and Wellbeing Plan completed with

Signatures: Date:


My diagnosis information

Cancer diagnosis:

Date of diagnosis:

Diagnostic tests done

(dates and results):

Colonoscopy

CT Scan

MRI Scan

Ultrasound scan

Pet scan

Pre-op treatment

Chemotherapy

Radiation

Other important information:

|FN

H2521

00ä~


My treatment information (including dates, locations):

Name of my operation:

The location of my cancer and the piece of bowel (colon) that was removed is as shown on the diagram.

Likely effects on how my body will work:

My surgical team

Chemotherapy

Radiation

Other

My follow-up plan:

No regular follow-up as discussed with my surgeon

Regular follow-up of:

CT / Ultrasound scans

Blood tests

Colonoscopy

Other

|FN

H2521

00ä~


Disclaimer:

It is important to realise that many management questions have not been comprehensively addressed in randomised trials and guideline base recommendations cannot always account for individual variation among patients. These recommendations are not intended to supplant physician judgement with respect to particular patients or special clinical situations and cannot be considered inclusive of all proper methods of care or exclusive of other treatments reasonable directed at obtaining the same results. Accordingly we consider adherence to these recommendations to be voluntary, with the ultimate determination regarding their application to be made by the physician in light of each patient’s individual circumstances.

Other important information:

A copy of this Health and Wellbeing Plan has been sent to the following members of your healthcare team:

GP Name: Fax:

Cancer Council Victoria Helpline Fax: 9635 5290

Filed in hospital medical record

Health and Wellbeing Plan Treatment Summary completed with:

Name:

Position:

Signature:

Date:

Hospital: Northern Health Fax: 9401 5607

Interpreter: YES / NO State language if applicable:

Carer / significant other present: YES / NO


Appendix 9 My Health and Wellbeing Plan (Breast service version)

My Health and Wellbeing Plan Name:

Date:

This plan is designed to help you to be well by


giving you a record about your cancer and treatment This is your plan and guide to


steps you can take to be well and stay healthy The information in the plan will help you know when you need to see someone about your health, who to see and what to ask.

My recommended after care: Any persistent change should always be reported to your doctor

Report these signs and symptoms if they don’t go away:

Your Health Care Provider contact:


Things to do How often Who will organise? When?

Your Health Care Provider contact:


My concerns


Practical Concerns: (managing daily tasks, work, child care, finances, leisure, housing, holiday planning etc)

Family and Social Concerns: (relationships, family health concerns and ability to have children)

Emotional Concerns (worry, fears, depression, sadness, loss of interest in usual activities)

Physical Concerns: (pain, menopausal symptoms, bone health, altered bowel habit, fatigue, sleep disturbance, sexual issues, other)


Access to services

Other

My hopes

socialise more, join a group, take up an interest , reinvest energy in a relationship etc

Information and Recommendations:

Your Health Care Provider contact/s:


My Plan

What do I want to achieve?

How will I get there? Who /what will help me to do this?


How ready do I feel to get started with this? Rating 1-10



My Diagnosis Information: Cancer Diagnosis: Date of Diagnosis: Diagnostic tests done (dates and results):

My Treatment Information (including dates, locations): Surgery: Chemotherapy: Radiation: Other:

A copy of this Health and Wellbeing Plan has been sent to these other members of your health team:

GP Name: Fax:

Cancer Council Victoria Fax: 9635 5270

Filed in hospital medical record

Health and Wellbeing Plan Completed with:

Date:

Hospital: Austin Hospital Transitions Group Fax:

Carer / Significant other present: YES NO

Interpreter: YES N.A. State language if applicable:

Disclaimer: It is important to realise that many management questions have not been comprehensively addressed in randomised trials and guideline base recommendations cannot always account for individual variation among patients. These recommendations are not intended to supplant physician judgement with respect to particular patients or special clinical situations and cannot be considered inclusive of all proper methods of care or exclusive of other treatments reasonable directed at obtaining the same results. Accordingly we consider adherence to these recommendations to be voluntary, with the ultimate determination regarding their application to be made by the physician in light of each patient’s individual circumstances.


Appendix 10 My Health and Wellbeing Plan Update

My Health and Wellbeing Plan Update 2

Name: Date: Cancer Council Victoria is providing ongoing telephone support with your ‘Health and Wellbeing Plan’ that was developed with your hospital-based health professional/s four months ago. ‘Health and Wellbeing Plan’ progress

New concerns / information needs

Distress Thermometer completed

Your updated plans for wellbeing

A copy of your Health and Wellbeing Plan Update has been sent to your GP and the hospital. Health and Wellbeing Plan Update completed with: Phone: Fax:


Appendix 11 Mentoring Plan

Mentoring Aims Objectives

Time frame Outcomes

1. Equip participating health professionals with skills to promote increased self-management abilities in the people who have completed active treatment for cancer.

2. Facilitate reflective practice

focussing on adapting communication styles to achieve a chronic disease self-management approach.

3. Reinforce the changed power

relationship, responsibilities and dynamic inherent in self-management approaches.

4. Promote the evidence supporting self-management approaches and the benefits for staff and cancer survivors.

5. Build on the ‘Cancer

survivorship self-management education’ provided by Q.U.T.

Increase the level of confidence with assessment of the capacity for self-management in cancer survivors.

Reinforce an awareness of variables that impact self-management capacity and the application of these variables in assessing self-management capacity.

Encourage use of the trans-theoretical stages of change model to guide thinking about readiness to change.

Reinforce the importance of balancing targeted information provision with facilitating self-management.

Practice beginning to implement some basic Motivational Interviewing philosophies and core skills:

1. The cancer survivor guides the focus of the discussion while the health professional uses MI skills to facilitate ‘change talk’ and minimise resistance.

2. Build capacity to recognise ‘change talk’ and assess and build confidence to change.

3. Review rolling with resistance, using open questions and developing discrepancy skills and apply to cases.

4. Reinforce the usefulness of reflection and summaries in helping to structure the conversation and identify priorities.

5. Explain how expressing empathy is used in Motivational Interviewing and the importance of avoiding any communication that might suggest judgement of the person’s decisions.

6. Reflect on how interactions can be framed to overtly support collaborative problem definition and self-efficacy.

May2012- May 2013

o Confidence applying the trans-theoretical stages of change model and assessing the capacity for self-management.

o Achieve a shift in the power dynamic in

self-management conversations with survivors, where health professionals limit the provision of information and support survivor self-efficacy through actively engaging them in targeting key concerns, developing strategies to address concerns and problem solving barriers. Health professionals will be clear that it is not their role to ‘fix’ concerns.

o Health professionals will have a basic

understanding of MI philosophies and principles and will be able to begin to effectively use the key skills in interactions with survivors. It is not anticipated that health professionals will develop a high level of proficiency using Motivational Interviewing skills within the first 12 months of this project.

Theoretical framework derived from: Miller WR, Rollnick S, 2002 Motivational interviewing: Preparing people for change Guilford Press, New York.


Appendix 12 Version 1 (2011) NCCN Distress Thermometer and Problem Checklist summary of baseline data

Baseline Distress Thermometer Score (n=39) Mean 4.33, (Median 5), Range 0-10, Problems reported by participants at baseline (Some participants did not fully populate the whole Problem Checklist)

Total Number of problems reported Mean Median Range

6.19 5.00 0-18

Domain Summary Scores: Mean Median Range Practical Domain [6 items] 0.70 0.00 0-3 Family Domain [4 items] 0.52 0.00 0-3 Emotional Domain [6 items] 1.87 1.00 0-6 Physical Domain [21 items] 3.07 2.00 0-11 Spiritual Domain [1 item] 0.02 0.00 0-1

Top 10 Reported problems at baseline

Item (n) No. reporting problems [n (%)]

Fatigue 47 30 (63.8)

Worry 51 29 (56.9)

Sleep 49 21 (42.9)

Memory/Concentration 48 20 (41.7)

Sadness 50 19 (38.0)

Fears 50 17 (34.0)

Family Health Issues 26 8 (30.8)

Insurance/Financial 49 15 (30.6)

Work/School 50 14 (28.0)

Nervousness 49 13 (26.5)


Appendix 13 Version 1 (2011) NCCN Distress Thermometer and Problem Checklist summary of post-intervention data

Post-implementation Distress Thermometer Score

Mean 3.97, (Median 4), Range 0-8 Std. Deviation 2.456 Problems Reported By Participants Post-implementation

Total Number of problems reported Mean Median Range

7.65 7 0-22

Domain Summary Scores: Mean Median Range Practical Domain [6 items] .87 1.00 0-3 Family Domain [4 items] .68 .00 0-3 Emotional Domain [6 items] 2.03 2.0 0-6 Physical Domain [21 items] 4.06 4.0 0-15 Spiritual Domain [1 item] .00 .00 0-0

Top 10 Reported problems Post-implementation

Item (n) Participants reporting problems [n (%)]

Fatigue 30 18 (60.0)

Worry 29 17 (58.6)

Sleep 30 15 (50.0)

Sadness 29 13 (44.8)

Memory/Concentration 30 13 (41.9)

Fears 29 11 (37.9)

Nervousness 29 10 (34.5)

Insurance/Financial 29 10 (34.5)

Skin dry/itchy 30 10 (33.3)

Work/School 29 8 (27.6)


Appendix 14 Baseline Health Literacy Management Scale Data (n=57)

Individual Scores* HeLMs Item Mean Score Median Score 1

% 2 %

3 %

4 %

5 %

1 Read health information brochures 4.88 5.00 1.8 0.0 1.8 1.8 94.7

2 Get second opinion about your health 4.67 5.00 1.8 3.5 5.3 5.3 84.2

3 Ask for help to understand information 4.56 5.00 7.0 1.8 1.8 1.8 82.5

4 Carry out instructions that you doctor gives you 4.84 5.00 0.0 0.0 3.5 8.8 87.7

5 Use info to make decisions about my health 4.58 5.00 0.0 3.5 12.3 7.0 77.2

6 Make time for things that are good for my health 3.98 4.00 1.8 8.8 17.5 33.3 38.6

7 Ask a doctor questions 4.91 5.00 0.0 0.0 0.0 8.8 91.2

8 Read written information in hospitals/doctors clinics 4.91 5.00 1.8 0.0 0.0 1.8 96.5

9 Follow up with a doctor 4.74 5.00 0.0 1.8 7.0 7.0 84.5

10 Find health information in language 4.93 5.00 0.0 1.8 0.0 1.8 96.5

11 Ask someone to go with you to medical appts 4.74 5.00 0.0 1.8 8.8 3.5 86.0

12 Follow instructions that a doctor gives you 4.95 5.00 0.0 0.0 1.8 1.8 96.5

13 Know what to do to get to appointment 4.82 5.00 0.0 1.8 5.3 1.8 91.2

14 Pay attention to your health needs 4.21 5.00 1.8 1.8 21.1 24.6 50.9

15 Use advice from a doctor to make decisions (health) 4.67 5.00 0.0 1.8 8.8 10.5 78.9

16 Take a family or friend to medical appointments 4.74 5.00 0.0 0.0 12.3 1.8 86.0

17 Know how to get a doctor's appointment 4.89 5.00 1.8 0.0 1.8 0.0 96.5

18 Get the information you need when seeding drs 4.23 5.00 5.3 1.8 14.0 22.8 56.1

19 Discuss your health with others 4.47 5.00 0.0 3.5 17.5 7.0 71.9

20 Pay to see a doctor 3.53 4.00 19.3 8.8 14.0 15.8 42.1

21 Change to a different doctor 4.12 5.00 3.5 8.8 17.5 12.3 57.9

22 Afford transport for medical appts 4.70 5.00 3.5 0.0 3.5 8.8 84.2

23 Fill in medical forms 4.86 5.00 0.0 1.8 1.8 5.3 91.2

24 Know where to contact doctor 4.72 5.00 1.8 3.5 3.5 3.5 87.7

25 Find the energy to manage your health 3.56 3.00 3.5 5.3 43.9 26.3 21.1

26 Look for second opinion from a health professional 4.79 5.00 1.8 0.0 3.5 7.0 87.7

27 Change your lifestyle to improve your health 3.63 4.00 5.3 7.0 36.8 21.1 29.8

28 Pay for medication that you need 4.47 5.00 1.8 5.3 8.8 12.3 71.9

29 Know where you can see a doctor 4.88 5.00 1.8 0.0 1.8 1.8 94.6

*Scale: 1 = Unable to do it, 2 = Very difficult , 3= With some difficulty 4=With little difficulty, 5= Without any difficulty


Appendix 15 Post-intervention Health Literacy Management Scale Data (n=43)

HeLMs Item Mean Score Median Score Range 1 Read health information brochures 4.63 5.00 1-5

2 Get second opinion about your health 4.49 5.00 1-5

3 Ask for help to understand information 4.77 5.00 1-5

4 Carry out instructions that you doctor gives you 4.93 5.00 3-5

5 Use info to make decisions about my health 4.70 5.00 3-5

6 Make time for things that are good for my health 4.14 4.00 2-5

7 Ask a doctor questions 4.98 5.00 4-5

8 Read written information in hospitals/doctors clinics 4.91 5.00 1-5

9 Follow up with a doctor 4.91 5.00 3-5

10 Find health information in language 4.88 5.00 2-5

11 Ask someone to go with you to medical appointments 4.63 5.00 1-5

12 Follow instructions that a doctor gives you 4.95 5.00 4-5

13 Know what to do to get to appointment 4.79 5.00 1-5

14 Pay attention to your health needs 4.56 5.00 3-5

15 Use advice from a doctor to make decisions (health) 4.77 5.00 3-5

16 Take a family or friend to medical appointments 4.60 5.00 1-5

17 Know how to get a doctor's appointment 4.93 5.00 3-5

18 Get the information you need when seeding drs 4.40 5.00 1-5

19 Discuss your health with others 4.60 5.00 1-5

20 Pay to see a doctor 3.23 4.00 1-5

21 Change to a different doctor 4.35 5.00 1-5

22 Afford transport for medical appointments 4.81 5.00 1-5

23 Fill in medical forms 4.86 5.00 1-5

24 Know where to contact doctor 4.93 5.00 3-5

25 Find the energy to manage your health 4.26 5.00 2-5

26 Look for second opinion from a health professional 4.79 5.00 1-5

27 Change your lifestyle to improve your health 3.98 4.00 2-5

28 Pay for medication that you need 4.67 5.00 2-5

29 Know where you can see a doctor 4.95 5.00 3-5

*Scale: 1 = Unable to do it, 2 = Very difficult , 3= With some difficulty 4=With little difficulty, 5= Without any difficulty


Appendix 16 Baseline Health Education Impact Questionnaire data (n=57)

Individual Scores* heiQ Item Mean Score Median

Score 1

% 2

% 3

% 4

%

1 On most days of the week, I do at least one activity to improve my health (e.g., walking, relaxation, exercise)

2.98 3.00 1.8 21.1 54.4 22.8

2 Most days I am doing some of the things I really enjoy 2.88 3.00 1.8 26.3 54.4 17.5

3 As well as seeing my doctor, I regularly monitor changes in my health 3.19 3.00 1.8 5.3 64.9 28.1

4 I often worry about my health 2.93 3.00 1.8 31.6 38.6 28.1

5 I try to make the most of my life 3.44 3.00 0.0 3.5 49.1 47.4

6 I know what things can trigger my health problems and make them worse

2.75 3.00 5.3 29.8 49.1 15.8

7 My health problems make me very dissatisfied with my life 2.19 2.00 19.3 50.9 21.1 8.8

8 I am doing interesting things in my life 2.98 3.00 3.5 19.3 52.6 24.6

9

I do at least one type of physical activity every day for at least 30 minutes (e.g., walking, gardening, housework, golf, bowls, dancing, Tai Chi, swimming)

2.75 3.00 12.3 26.3 35.1 26.3

10 I have plans to do enjoyable things for myself during the next few days

3.04 3.00 3.5 14.0 57.9 24.6

11 I have a very good understanding of when and why I am supposed to take my medication

3.65 4.00 0.0 3.5 28.1 68.4

12 I often feel angry when I think about my health 2.11 2.00 29.8 40.4 19.3 10.5

13 On most days of the week, I set aside time for healthy activities (e.g. walking, relaxation, exercise)

3.09 3.00 1.8 22.8 40.4 35.1

14 I feel hopeless because of my health problems 1.81 2.00 43.9 38.6 10.5 7.0

15 I feel like I am actively involved in life 3.14 3.00 3.5 14.0 47.4 35.1

16 When I have health problems, I have a clear understanding of what I need to do to control them

2.79 3.00 3.5 26.3 57.9 12.3

17 I carefully watch my health and do what is necessary to keep as healthy as possible

3.19 3.00 0.0 12.3 56.1 31.6

*Scale: 1= Strongly disagree, 2= Disagree, 3= Agree, 4= Strongly Agree


Table 5

heiQ Item Mean Score

Median Score

1 %

2 %

3 %

4 %

18 I get upset when I think about my health 2.44 2.00 10.5 47.4 29.8 12.3

19 I walk for exercise, for at least 15 minutes per day, most days of the week 2.79 3.00 8.8 35.1 24.6 31.6

20 With my health in mind, I have realistic expectations of what I can and cannot do

3.09 3.00 1.8 10.5 64.9 22.8

21 If I think about my health, I get depressed 2.14 2.00 19.3 52.6 22.8 5.3

22 If I need help, I have plenty of people I can rely on 3.32 4.00 1.8 15.8 31.6 50.9

23 I have effective ways to prevent my symptoms (e.g. discomfort, pain and stress) from limiting what I can do in my life

2.89 3.00 1.8 19.3 66.7 12.3

24 I have very positive relationships with my healthcare professionals 3.40 3.00 0.0 1.8 56.1 42.1

25 I have a very good idea of how to manage my health problems 3.14 3.00 0.0 7.0 71.9 21.1

26 When I have symptoms, I have skills that help me cope 3.28 3.00 0.0 1.8 68.4 29.8

27 I try not to let my health problems stop me from enjoying life 3.42 3.00 0.0 5.3 47.4 47.7

28 I have enough friends who help me cope with my health problems 3.28 3.00 1.8 10.5 45.6 42.1

29 I communicate very confidently with my doctor about my healthcare needs 3.53 4.00 0.0 0.0 47.4 52.6

30 I have a good understanding of equipment that could make my life easier 2.32 2.00 1.8 70.2 22.8 5.3

31 When I feel ill, my family and carers really understand what I am going through 2.72 3.00 8.8 26.3 49.1 15.8

32 I confidently give healthcare professionals the information they need to help me

3.49 4.00 0.0 1.8 47.4 50.9

33 I get my needs met from available healthcare resources (e.g. doctors, hospitals and community services)

3.35 3.00 0.0 7.0 50.9 42.1

*Scale: 1= Strongly disagree, 2= Disagree, 3= Agree, 4=Strongly Agree


Table 5

heiQ Item Mean Score Median

Score 1

% 2

% 3

% 4

%

34 My health problems do not ruin my life 3.18 3.00 1.8 12.3 52.6 33.3

35 Overall, I feel well looked after by friends or family 3.30 3.00 3.5 10.5 38.6 47.4

36 I feel I have a very good life even when I have health problems 3.26 3.00 0.0 12.3 49.1 38.6

37 I get enough chances to talk about my health problems with people who understand

2.86 3.00 5.3 19.3 59.6 15.8

38 I work in a team with my doctors and other healthcare professionals 3.00 3.00 0.0 17.5 64.9 17.5

39 I do not let my health problems control my life 3.23 3.00 0.0 10.5 56.1 33.3

40 If others can cope with problems like mine, I can too 3.25 3.00 0.0 7.0 61.4 31.6

* Scale: 1 = Strongly Disagree, 2 = Disagree, 3=Agree, 4=Strongly Agree


Appendix 17 Post-implementation Health Education Impact Questionnaire data (n=43)

heiQ Item Mean Score Median Score Range

1 On most days of the week, I do at least one activity to improve my health (e.g., walking, relaxation, exercise)

3.09 3.00 1-4

2 Most days I am doing some of the things I really enjoy 3.02 3.00 2-4

3 As well as seeing my doctor, I regularly monitor changes in my health 3.19 3.00 2-4

4 I often worry about my health 2.53 3.00 1-4

5 I try to make the most of my life 3.63 4.00 2-4

6 I know what things can trigger my health problems and make them worse 2.84 3.00 1-4

7 My health problems make me very dissatisfied with my life 1.93 2.00 1-4

8 I am doing interesting things in my life 3.23 3.00 2-4

9 I do at least one type of physical activity every day for at least 30 minutes (e.g., walking, gardening, housework, golf, bowls, dancing, Tai Chi, swimming)

3.02 3.00 1-4

10 I have plans to do enjoyable things for myself during the next few days 3.19 3.00 2-4

11 I have a very good understanding of when and why I am supposed to take my medication 3.56 4.00 3-4

12 I often feel angry when I think about my health 1.93 2.00 1-4

13 On most days of the week, I set aside time for healthy activities (e.g. walking, relaxation, exercise)

3.09 3.00 1-4

14 I feel hopeless because of my health problems 1.67 2.00 1-4

15 I feel like I am actively involved in life 3.37 3.00 2-4

16 When I have health problems, I have a clear understanding of what I need to do to control them

3.09 3.00 1-4

17 I carefully watch my health and do what is necessary to keep as healthy as possible 3.09 3.00 2-4

18 I get upset when I think about my health 2.23 2.00 1-4

19 I walk for exercise, for at least 15 minutes per day, most days of the week 3.05 3.00 2-4

20 With my health in mind, I have realistic expectations of what I can and cannot do 3.33 3.00 2-4

21 If I think about my health, I get depressed 2.02 2.00 1-4

22 If I need help, I have plenty of people I can rely on 3.28 3.00 1-4

23 I have effective ways to prevent my symptoms (e.g. discomfort, pain and stress) from limiting what I can do in my life

3.09 3.00 2-4

24 I have very positive relationships with my healthcare professionals

3.33 3.00 3-4


heiQ Item Mean Score Median Score Range

25 I have a very good idea of how to manage my health problems 3.19 3.00 2-4

26 When I have symptoms, I have skills that help me cope 3.35 3.00 2-4

27 I try not to let my health problems stop me from enjoying life 3.53 4.00 3-4

28 I have enough friends who help me cope with my health problems 3.40 3.00 1-4

29 I communicate very confidently with my doctor about my healthcare needs 3.40 3.00 2-4

30 I have a good understanding of equipment that could make my life easier 2.14 2.00 1-4

31 When I feel ill, my family and carers really understand what I am going through 2.86 3.00 1-4

32 I confidently give healthcare professionals the information they need to help me 3.44 3.00 2-4

33 I get my needs met from available healthcare resources (e.g. doctors, hospitals and community services)

3.28 3.00 2-4

34 My health problems do not ruin my life 3.28 3.00 1-4

35 Overall, I feel well looked after by friends or family 3.44 4.00 1-4

36 I feel I have a very good life even when I have health problems 3.51 4.00 2-4

37 I get enough chances to talk about my health problems with people who understand 2.91 3.00 2-4

38 I work in a team with my doctors and other healthcare professionals 3.14 3.00 1-4

39 I do not let my health problems control my life 3.30 3.00 2-4

40 If others can cope with problems like mine, I can too 3.40 3.00 3-4


Appendix 18 Baseline assessment of self-efficacy in managing cancer symptoms and treatment side-effects subscales (n=57)

“Because of your Diagnosis, how confident are you to…”[Answer scale 1(not at all confident) –10 (Extremely confident)] Mean Median Range Refocused your energy on what you can achieve? 7.67 8.00 1-10

Actively sought information about your illness and treatment? 8.24 9.00 2-10

Asked your doctor questions about your illness or treatment? 8.72 9.00 1-10

Tried to understand the medical information given to you about your illness and treatments? 9.11 10.00 1-10

Tried to maintain your usual routine? 7.88 8.00 2-10

Tried to keep things done around the house? 8.02 8.00 4-10

Tried to keep your life as normal as possible? 8.30 9.00 4-10

Continued with your usual social activities? 7.70 8.00 1-10

Maintained your independence? 8.72 9.00 3-10

Kept yourself busy? 8.35 9.00 3-10

“Because of your Diagnosis, have you experienced or tried any of the following? How frequently? [Answer scale 1(not at all) – 4 (a great deal)]”

Individual Scores Mean Median Range 1

Not at all% 2

% 3

% 4

A great deal% Refocused your energy on what you can achieve? 3.21 3.00 1-4 3.5 15.8 36.8 43.9

Actively sought information about your illness and treatment? 2.86 3.00 1-4 17.5 15.8 29.8 36.8

Asked your doctor questions about your illness or treatment? 3.37 4.00 2-4 0.0 22.8 17.5 59.6

Tried to understand the medical information given to you about your illness and treatments?

3.89 4.00 1-4 1.8 0.0 5.3 93.0

Tried to maintain your usual routine? 3.12 3.00 1-4 5.3 22.8 26.3 45.6

Tried to keep things done around the house? 3.39 4.00 1-4 3.5 8.8 33.3 54.4

Tried to keep your life as normal as possible? 3.56 4.00 1-4 3.5 10.5 12.3 73.7

Continued with your usual social activities? 2.86 3.00 1-4 8.8 26.3 35.1 29.8

Maintained your independence? 3.56 4.00 2-4 0.0 12.3 19.3 68.4

Kept yourself busy? 3.35 4.00 1-4 7.0 10.5 22.8 59.6


Appendix 19 Post-intervention assessment of self-efficacy in managing cancer symptoms and treatment side-effects subscales

“Because of your Diagnosis, how frequently have you… [Answer scale 1(not at all) – 4 (a great deal)]”

N Mean Median Range

Refocused your energy on what you can achieve? 43 2.60 3.00 1-4

Actively sought information about your illness and treatment? 43 1.95 2.00 1-4

Asked your doctor questions about your illness or treatment? 43 2.65 3.00 1-4

Tried to understand the medical information given to you about your illness and treatments? 43 3.91 4.00 1-4

Tried to maintain your usual routine? 43 3.21 4.00 1-4

Tried to keep things done around the house? 43 3.33 4.00 1-4

Tried to keep your life as normal as possible? 43 3.67 4.00 1-4

Continued with your usual social activities? 43 3.33 4.00 1-4

Maintained your independence? 43 3.72 4.00 1-4

Kept yourself busy? 43 3.67 4.00 1-4

“Because of your Diagnosis, how confident are you to…” [Answer scale 1(not at all confident) – 10 (Extremely confident)]

N Mean Median Range

Refocused your energy on what you can achieve? 43 8.23 8.00 5-10

Actively sought information about your illness and treatment? 42 8.83 9.00 4-10

Asked your doctor questions about your illness or treatment? 43 9.23 9.00 5-10

Tried to understand the medical information given to you about your illness and treatments? 42 9.45 10.00 5-10

Tried to maintain your usual routine? 40 8.50 9.00 4-10

Tried to keep things done around the house? 40 8.23 9.00 5-10

Tried to keep your life as normal as possible? 41 8.98 9.00 5-10

Continued with your usual social activities? 41 8.63 9.00 4-10

Maintained your independence? 41 9.00 9.00 4-10

Kept yourself busy? 42 8.90 9.00 4-10


Appendix 20 Pre-intervention questionnaire data (n=55)

Individual Scores*

Questions Mean Median 1 %

2 %

3 %

4 %

5 %

I have already been educated about the impact of cancer, its treatment and the likelihood of recurrence

4.33 5 3.6 5.5 0.0 36.4 54.5

I still have questions about the impact of cancer and its treatment and the likelihood of recurrence

3.75 4 5.5 20.0 1.8 20.0 32.7

I have started doing things to improve my health since I was diagnosed with cancer

4.16 4 0.0 9.1 7.3 41.8 41.8

Now that I have been diagnosed with cancer, I think that developing a plan and goals will help me manage my health better

4.36 5 0.0 5.5 3.8 40.0 50.9

My GP has the necessary skill to manage my follow-up care 3.55 4 7.3 10.9 21.8 40.0 20.0

I believe my GP will re-engage a specialist should he/she need to do so 4.62 5 0.0 1.8 1.8 29.1 67.3

I believe my GP can manage monitoring for cancer recurrence 3.47 4 9.1 9.1 29.1 30.9 21.8

I have easy access to my GP 4.42 5 3.6 3.6 3.6 25.5 63.6

I don’t have to call weeks in advance for an appointment with my GP 4.18 4 0.0 7.3 12.7 34.5 45.5

* Participants answered on a 5-point scale from 1 (Strongly disagree) to 5 (Strongly agree)


Appendix 21 Post-intervention questionnaire data (n=43)

Health and Wellbeing Plan Implementation (n = 43)

Questionnaire Item “Yes” [n (%)] To what extent? Mean Median Range Did you receive education about the impact of cancer and its treatment and the likelihood of recurrence?

30 (69.8) 1 “not at all”- 4 “a great deal”

2.88 3.00 1-4

Do you have remaining questions about the impact of cancer and its treatment and the likelihood of recurrence?

18 (41.9) 1.50 1.00 1-4

Do you believe the “My Health & Well-being Plan” impacted on your ability to manage your health?

37 (86.0) 3.10 3.00 1-4

Did you develop some goals and strategies during the ““My Health & Well-being Plan” session?

38 (88.4) 2.98 3.00 1-4

Did developing goals and strategies help you return to activities that are important to you or take up new activities?

37 (86.0) 2.93 3.00 1-4

Did you receive an information pack from a health professional as part of completing a My Health & Well-being Plan?

33 (76.7) 2.64 3.00 1-4

Do you think you developed new knowledge, skills and strengths while using My Health & Well-being Plan?

34 (79.1) 2.76 3.00 1-4


Appendix 22 GP feedback summary

Survey question Response Count

YES NO No data Do you support the concept of self-management plans for cancer survivors? 21 1 0 22

Do you believe ‘My Health and Wellbeing Plan’ will be useful to you in your continuing care of this patient?

20 2 0 22

Do you believe ‘My Health and Wellbeing Plan’ will be useful for your patient in managing his/her health needs?

21 1 0 22

What would improve the design or implementation? a) On-line version?

4

10

8

22

b) Produce as part of discharge summary?

14 7 1 22

c) Other?-specify

“would like online version downloaded to GP's system…probably better not to include plan in discharge summary -better able to be formulated when patient has recovered”

“make plan shorter”

Comments

“shorter document- print only sections filled in by pt rather than large blank spaces”

“document is 'health and wellbeing plan' -care plan is confusing. GPs have separate care plans”


Appendix 23 Pre-training: how often a participant uses a strategy when facilitating self-management behaviour for persons who have completed cancer treatment (scale 1(not at all) to 4(a great deal))

Strategy n Mean SD Median Not at all [n (%)] 2 [n (%)] 3 [n (%)] A great deal [n (%)]

Health promotion approaches 12 2.92 .793 3 0 (0) 4 (33.3) 5 (41.7) 3 (25)

Assessment of health risk factors 12 2.75 .754 3 0 (0) 5 (41.7) 5 (41.7) 2 (16.7)

Communication skills 12 3.83 .577 4 0 (0) 1 (8.3) 0 (0) 11 (91.7)

Assessment of self-management capacity

12 2.58 .996 2 1 (8.3) 6 (50) 2 (16.7) 3 (25)

Collaborative care planning 12 3.08 .996 3 1 (8.3) 2 (16.7) 4 (33.3) 5 (41.7)

Use of peer support 12 3.33 .888 4 0 (0) 3 (25) 2 (16.7) 7 (58.3)

Cultural awareness 12 3.08 .669 3 0 (0) 2 (16.7) 7 (58.3) 3 (25)

Psychological assessment and support 12 3.33 .778 3.5 0 (0) 2 (16.7) 4 (33.3) 6 (50)

Motivational interviewing Collaborative problem definition Goal setting and action planning Structured problem solving Working in multidisciplinary teams Organisational change techniques Use of evidence based practice

12 12 12 12 12 11 12

1.92 2.42 3.08 2.92 3.67 2.09 3.83

.900 1.084

.900

.793

.651 1.044

.389

2 2.5

3 3 4 2 4

5 (41.7) 3 (25)

0 (0) 0 (0) 0 (0)

4 (36.4) 0 (0)

3 (25) 3 (25)

4 (33.3) 4 (33.3)

1 (8.3) 3 (27.3)

0 (0)

4 (33.3) 4 (33.3)

3 (25) 5 (41.7) 2 (16.7) 3 (27.2) 2 (16.7)

0 (0) 2 (16.7) 5 (41.7)

3 (25) 9 (75)

1 (9.1) 10 (83.3)


Appendix 24 Pre-training: participant confidence in using strategy when facilitating self-management behaviour for persons who have completed cancer treatment (scale 1(not at all) to 10 (extremely confident))

Strategy n Mean

SD Median Not at all

[n(%)]

2 [n(%)]

3 [n(%)]

4 [n(%)]

5 [n(%)]

6 [n(%)]

7 [n(%)]

8 [n(%)]

9 [n(%)]

Extremely confident

[n(%)] Health promotion approaches 12 5.92 1.564 6 0(0) 0(0) 1(8.3) 2(16.7) 0(0) 5(41.7) 2(16.7) 2(16.7) 0(0) 0(0)

Assessment of health risk factors 12 6.25 1.765 6 0(0) 0(0) 0(0) 3(25) 1(8.3) 3(25) 1(8.3) 3(25) 1(8.3) 0(0)

Communication skills 12 8.00 1.414 8 0(0) 0(0) 0(0) 1(8.30) 0(0) 0(0) 1(8.3) 4(41.7) 4(41.7) 0(0)


12

5.17

1.946

4.5

0(0)

0(0)

2(16.7)

4(33.3)

2(16.7)

1(8.3)

1(8.3)

1(8.3)

1(8.3)

0(0)

Collaborative care planning 12 6.92 1.730 7 0(0) 0(0) 0(0) 2(16.7) 1(8.3) 0(0) 4(33.3) 3(25) 2(16.7) 0(0)

Use of peer support 12 7.42 1.621 8 0(0) 0(0) 0(0) 1(8.3) 1(8.3) 1(8.3) 1(8.3) 4(41.7) 3(25) 0(0)

Cultural awareness 12 6.75 1.658 7.5 0(0) 0(0) 0(0) 1(8.3) 3(25) 1(8.3) 1(8.3) 4(41.7) 1(8.3) 0(0)

Psychological assessment and support

12

7.5

1.834

7.5

0(0)

0(0)

1(8.3)

0(0)

0(0)

1(8.3)

4(33.3)

2(16.7)

3(25)

1(8.3)

Motivational interviewing Collaborative problem definition Goal setting and action planning Structured problem solving Working in multidisciplinary teams Organisational change techniques Use of evidence based practice

12 11 12 12

12 11 12

4.33 5.73 7.00 6.00

8.33 4.64

8.5

2.060 1.737 2.132 1.859

2.146 2.838

.905

4 6

7.5 6.5

9 5 8

0(0) 0(0) 0(0) 0(0)

0(0)

2(18.2) 0(0)

3(25) 0(0) 0(0) 0(0)

0(0)

1(9.1) 0(0)

2(16.7) 1(9.1) 1(8.3) 1(8.3)

0(0)

2(18.2) 0(0)

2(16.7) 2(18.2)

1(8.3) 3(25)

2(16.7)

0(0) 0(0)

1(8.3) 1(9.1) 1(8.3)

0(0)

0(0) 2(18.2)

0(0)

2(16.7) 5(45.5)

1(8.3) 2(16.7)

0(0) 0(0) 0(0)

1(8.3) 0(0)

2(16.7) 4(33.3)

0(0)

2(18.2) 1(8.3)

1(8.3) 1(9.1) 3(25)

1(8.3)

2(16.7) 1(9.1) 6(50)

0(0) 1(9.1)

2(16.7) 1(8.3)

4(33.3)

1(9.1) 6(50)

0(0) 0(0)

1(8.3) 0(0)

4(33.3)

0(0) 2(16.7)


Appendix 25 Pre-training strategies and learning preferences

Strategies used to promote self-management No. participants reporting strategy

Skills that participants would like to learn from training

No. participants reporting skill

Identification of supports 5 Motivational interviewing 5

Goal setting 5 Patient self-management 4

Communication skills 4 Communication skills 3

Identification of patient’s problems/needs 4 Goal setting 1

Provision of information 2 Health promotion 1

Collaboration 2 Collaboration with other health professional 1

Seeking and review of information 2 Advocacy skills 1

Development of care plans 1 Greater understanding survivorship issues 1

Linking to peer support 1 Collaborative problem definition 1

Motivational interviewing 1 Develop skills related to survivorship 1

Teaching practical skills 1 Consolidation of current knowledge 1

Identification of key health professionals 1 Confidence in administering the project 1


Appendix 26: Staff post-training evaluation

Staff post-training evaluation – Conducted on 29/02/2012

Participant confidence post training in using strategy when facilitating self-management behaviour for persons who have completed cancer treatment (scale 1(not at all) to 10 (extremely confident)). (n=7)

Strategy Mean SD Median Not at all

[n(%)]

2 [n(%)]

3 [n(%)]

4 [n(%)]

5 [n(%)]

6 [n(%)]

7 [n(%)]

8 [n(%)]

9 [n(%)]

Extremely confident

[n(%)] Health promotion approaches 6.43 1.397 7 0(0) 0(0) 0(0) 1(14.3) 1(14.3) 0(0) 4(57.1) 1(14.3) 0(0) 0(0)

Assessment of health risk factors 7.00 1.633 7 0(0) 0(0) 0(0) 1(14.3) 0(0) 1(14.3) 2(28.6) 2(28.6) 1(14.3) 0(0)

Communication skills 8.29 1.380 9 0(0) 0(0) 0(0) 0(0) 0(0) 1(14.3) 1(14.3) 1(14.3) 3(42.9) 1(14.3)


7.29

1.254

8

0(0)

0(0)

0(0)

0(0)

0(0)

3(42.9)

0(0)

3(42.9)

1(14.3)

0(0)

Collaborative care planning 7.43 1.134 8 0(0) 0(0) 0(0) 0(0) 0(0) 2(28.6) 1(14.3) 3(42.9) 1(14.3) 0(0)

Use of peer support 7.86 1.464 8 0(0) 0(0) 0(0) 0(0) 1(14.3) 0(0) 1(14.3) 2(28.6) 3(42.9) 0(0)

Cultural awareness 7.57 1.134 7 0(0) 0(0) 0(0) 0(0) 0(0) 1(14.3) 3(42.9) 1(14.3) 2(28.6) 0(0)

Psychological assessment and support

7.86

1.069

7

0(0)

0(0)

0(0)

0(0)

0(0)

0(0)

4(57.1)

0(0)

3(42.9)

0(0)

Motivational interviewing 6.71 1.113 7 0(0) 0(0) 0(0) 0(0) 1(14.3) 2(28.6) 2(28.6) 2(28.6) 0(0) 0(0)

Collaborative problem definition 6.86 .690 7 0(0) 0(0) 0(0) 0(0) 0(0) 2(28.6) 4(57.1) 1(14.3) 0(0) 0(0)

Goal setting and action planning 7.86 1.345 8 0(0) 0(0) 0(0) 0(0) 0(0) 1(14.3) 2(28.6) 2(28.6) 1(14.3) 1(14.3)

Structured problem solving 7.29 .756 7 0(0) 0(0) 0(0) 0(0) 0(0) 1(14.3) 3(42.9) 3(42.9) 0(0) 0(0)

Working in multidisciplinary teams 8.71 1.496 9 0(0) 0(0) 0(0) 0(0) 0(0) 1(14.3) 0(0) 2(28.6) 1(14.3) 3(42.9)

Organisational change techniques 5.71 2.360 6 1(14.3) 0(0) 0(0) 0(0) 1(14.3) 3(42.9) 0(0) 2(28.6) 0(0) 0(0)

Use of evidence based practice 8.71 1.380 9 0(0) 0(0) 0(0) 0(0) 0(0) 1(14.3) 0(0) 1(14.3) 3(42.9) 2(28.6)


Appendix 27: Staff final survey evaluation-frequency of use of skills

Staff final survey evaluation – Conducted from 8/11/13

How often a participant uses a strategy when facilitating self-management behaviour for persons who have completed cancer treatment (scale 1(not at all) to 4(a great deal)).

Strategy n Mean SD Median Not at all [n (%)]

2 [n (%)] 3 [n (%)] A great deal [n (%)]

Health promotion approaches 5 3.2 .447 3 0 (0) 0 (0) 4 (80) 1 (20)

Assessment of health risk factors 6 3.33 .516 3 0 (0) 0 (0) 4 (66.7) 2 (33.3)

Communication skills 6 3.83 .408 4 0 (0) 0 (0) 1 (16.7) 5 (83.3)


6

3.17

.753

3

0 (0)

1 (16.7)

3 (50)

2 (33.3)

Collaborative care planning 6 3.5 .837 4 0 (0) 1 (16.7) 1 (16.7) 4 (66.7)

Use of peer support 6 3.33 .816 3.5 0 (0) 1 (16.7) 2 (33.3) 3 (50)

Cultural awareness 6 2.83 .753 3 0 (0) 2 (33.3) 3 (50) 1 (16.7)

Psychological assessment and support 6

4

.000

4

0 (0)

0 (0)

0 (0)

6 (100)

Motivational interviewing 6 3 .632 3 0 (0) 1 (16.7) 4 (66.7) 1 (16.7)

Collaborative problem definition 6 3 .632 3 0 (0) 1 (16.7) 4 (66.7) 1 (16.7)

Goal setting and action planning 6 3.67 .516 4 0 (0) 0 (0) 2 (33.3) 4 (66.7)

Structured problem solving 6 3.5 .548 3.5 0 (0) 0 (0) 3 (50) 3 (50)

Working in multidisciplinary teams 6 3.5 .548 3.5 0 (0) 0 (0) 3 (50) 3 (50)

Organisational change techniques 6 2.17 .753 2 1 (16.7) 3 (50) 2 (33.3) 0 (0)

Use of evidence based practice

6 3.83 .408 4 0 (0) 0 (0) 1 (16.7) 5 (83.3)


Appendix 29 Paragraph summaries

2 paragraph summary

The North Eastern Melbourne Integrated Cancer Service (NEMICS) piloted a survivorship care plan

that was designed to support cancer survivors to self-manage their health and wellbeing after

hospital-based treatment. Three acute health services in north-eastern Melbourne partnered with

the Cancer Council Victoria HELPLINE service, Queensland University of Technology and NEMICS for

this project. Health services nurses supported 57 participants to develop their own health and

wellbeing plan and HELPLINE nurses provided telephone support with the plans at one, four and

eight months following development of the plan. The nurses received education and mentoring in

skills to promote survivor self-management.

Interviews were scheduled prior to and six months following plan development with 43/50

participants who completed the project. The Health Education Impact Questionnaire, Health

Literacy Management Scale and subscales of the Assessment of self-efficacy in managing cancer

symptoms and treatment side effects were completed during interviews. Of the participants who

completed project evaluation, 88.4% developed goals or strategies whilst using the plan and 86%

reported that developing goals helped them to return to activities that were important to them or to

take up new activities. Holiday planning, managing challenging emotions, improving exercise and

diet, returning to work and exploring new leisure activities were common goal areas. Participants

who experienced depression and anxiety reported benefit from the health and wellbeing plan.

Statistically significant change was evident for ‘emotional wellbeing’, ‘positive and active

engagement in life’ and ‘participant attitudes towards their health’ although no other significant

changes to health literacy or self-efficacy were found. Further research to identify who benefits

most from supported self-management care plans is required to aid targeting of this type of

intervention.


1 page lay summary

The North Eastern Melbourne Integrated Cancer Service (NEMICS) received funding from the

Victorian Department of Health to pilot a survivorship care plan that was designed to support cancer

survivors to self-manage their health after hospital-based treatment. Three acute health services in

north-eastern Melbourne partnered with the Cancer Council Victoria HELPLINE service, Queensland

University of Technology and NEMICS for this project.

Participants were recruited from a haematology service, breast cancer service, colorectal service and

ambulatory oncology rehabilitation program. Eligible survivors who called the Cancer Council

Victoria HELPLINE service or attended support groups were invited to self-refer to the project.

Health services nurses supported 57 participants to develop their own health and wellbeing plan and

HELPLINE nurses provided telephone support with the plans at one, four and eight months following

plan development. The nurses received education and mentoring in skills to promote survivor self-

management.

Interviews were scheduled prior to and six months following plan development with 43/50

participants who completed the project. The Health Education Impact Questionnaire, Health

Literacy Management Scale and subscales of the Assessment of self-efficacy in managing cancer

symptoms and treatment side effects were completed during interviews. Of those who completed

project evaluation, 88.4% participants developed goals or strategies whilst using the plan and 86%

reported that developing goals helped them to return to activities that were important to them or to

take up new activities. Holiday planning, managing challenging emotions, improving exercise and

diet, returning to work and exploring new leisure activities were common goal areas.

Most participants who completed the project (86%) believed that the plan had impacted on their

ability to manage their health and 69.8% reported that they had received information about the

impact of cancer/cancer treatments and the likelihood of recurrence through the plan. Those who

experienced depression and anxiety particularly reported benefit from the plan and the follow-up

calls provided by the HELPLINE service.

Statistically significant change was evident for ‘emotional wellbeing’, ‘positive and active

engagement in life’ and ‘participant attitudes towards their health’ although no other statistically

significant changes to health literacy or self-efficacy were found. Participants scored very highly for

health literacy and self-efficacy during the initial interview and this may have impacted the ability to

demonstrate further change.

While feedback was generally positive, some participants chose not to develop wellbeing goals and

others disengaged from the project follow-up. Further research to identify who benefits most from

supported self-management care plans is required to aid targeting of this type of intervention.


i http://www.ncsi.org.uk/what-we-are-doing/risk-stratified-pathways-of-care/risk-stratification/ © Macmillan Cancer Support 2013 department of health National Cancer Survivorship Initiative Stratified Pathways of Care) ii National Cancer Survivorship Initiative Supported Self-Management Workstream Self-management support for cancer survivors: guidance for developing interventions. An update of the evidence Macmillan Cancer Support, March, 2010 Nicola J Davies and Lynn Batehup iii North Eastern Melbourne Integrated Cancer Services 2014, Location of cancer services, viewed 9

th January

2014,< http://www.nemics.org.au/page/Improving_cancer_care/Regional_Service_Planning/>.

iv Macmillan Cancer Support 2012, Cured but at what cost? Long term consequences of cancer and its

treatment, Macmillan Cancer Support, U.K.

v Department of Health 2008, Victoria's Cancer Action Plan 2008-2011, Cancer Strategy and Development,

State Government of Victoria, Melbourne.

vi Macmillan Cancer Support 2012, Cured but at what cost? Long term consequences of cancer and its

treatment, Macmillan Cancer Support, U.K.

vii Molassiotis A, Zheng Y, Denton-Cardew L, Swindell R, Brunton L 2010, ‘Symptoms experienced by cancer

patients during the first year from diagnosis: patient and informal caregiver ratings and agreement’, Palliative Support Care, vol.8, pp.313–324. Bennion A E, Molassiotis A, 2013, ‘Qualitative research into the symptom experiences of adult cancer patients after treatments: a systematic review and meta-synthesis’, Supportive Care in Cancer, vol.21, pp.9–25.

viii Koczwara, B., Miller, M., Woodman, R., Coveney, J., Booth, S., Dollman, J., et al. (2013). Chronic conditions

and lifestyle behaviour after cancer: the differences between 2,103 cancer cases and 4,185 age and gender matched controls. In Flinders Centre for Innovation in Cancer: Survivorship Conference. . Flinders Centre for Innovation in Cancer: Survivorship Conference. Adelaide. Feb 2013.

ix Foster C, Fenlon D 2011, ‘Recovery and self-management support following primary cancer treatment’,

British Journal of Cancer, Vol 105, pp.S21–S28.

x Foster C. Fenlon D 2011 ‘Recovery and self-management support following primary cancer treatment’,

British Journal of Cancer, Vol 105, pp.S21–S28.

xi Brunton L, Booker J, Molassiotis 2012, ‘Making sense of symptoms in men with prostate cancer: a

longitudinal qualitative exploration’, International Journal of Urology Nursing, vol 6(3), pp.107-114.

xii Macmillan Cancer Support, 2013, Risk-stratified-pathways-of-care, Department of Health, National Cancer

Survivorship Initiative, viewed <http://www.ncsi.org.uk/what-we-are-doing/risk-stratified-pathways-of-care/risk-stratification/.>.

xiii Davies N, Batehup, 2010, Self-management support for cancer survivors: guidance for developing

interventions. An update of the evidence, National Cancer Survivorship Initiative Supported Self-Management Workstream, Macmillan Cancer Support.

xiv Chronic condition self-management guideline for general practitioners working with chronic conditions, The

Royal Australian College of General Practitioners Commonwealth, Department of Health and Ageing, viewed 8 January 2013, <http://www.gmsbml.org.au/images/files/Chronic%20Condition%20Selfmanagement%20Guidelines%20for%20GPs.pdf>.

xv Macmillan Cancer Support, 2013, Risk-stratified-pathways-of-care, Department of Health, National Cancer

Survivorship Initiative, viewed <http://www.ncsi.org.uk/what-we-are-doing/risk-stratified-pathways-of-care/risk-stratification/.>.

xvi Jefford M, Karahalios E, Pollard A, Baravelli C, Carey M, Franklin J, Aranda S, Schofield P 2008, ‘Survivorship

issues following treatment completion: Results from focus groups with Australian cancer survivors and health

professionals’, Journal of Cancer Survivorship, vol 2(1), pp. 20-32.

xvii Miller WR, Rollnick S, 2002 Motivational interviewing: Preparing people for change Guilford Press, New

York.

http://www.ncsi.org.uk/what-we-are-doing/risk-stratified-pathways-of-care/risk-stratification/


http://www.gmsbml.org.au/images/files/Chronic%20Condition%20Selfmanagement%20Guidelines%20for%20GPs.pdf

http://www.gmsbml.org.au/images/files/Chronic%20Condition%20Selfmanagement%20Guidelines%20for%20GPs.pdf




xviii

Koczwara B, Miller M, Woodman R, Coveney J, Booth S, Dollman J, et al, 2013, Chronic conditions and lifestyle behaviour after cancer: the differences between 2,103 cancer cases and 4,185 age and gender matched controls. Flinders Centre for Innovation in Cancer: Survivorship Conference. Adelaide. xix

Osborne RH, Elsworth GR, Whitfield K 2007 ‘The Health Education Impact Questionnaire (heiQ): an outcomes and evaluation measure for patient education and self-management interventions for people with chronic conditions’, Patient Education and Counselling, vol 66(2), pp.192–201.

xx Maunsell E, Lauzier S, Brunet J, Campbell S, Elsworth G, Osborne RH, 2011, Validation of a New Measure of

Patient Empowerment in Oncology: Five Health Education Impact Questionnaire (Heiq) Scales. Oral presentation given at the 16th International Society for Pharmacoeconomics and Outcomes Research Annual International Meeting, Baltimore, MD.

xxi Jordan J E 2009, Conceptualising and measuring health literacy from the patient perspective, PhD thesis,

Department of Medicine (RMH/WH), The University of Melbourne.

<http://repository.unimelb.edu.au/10187/6776>

xxii Campbell J, Yates P, Clinton M, Mirolo B, Sellick K 2008, Cancer Self Efficacy, Report to the Queensland

Nursing Council.

http://repository.unimelb.edu.au/10187/6776

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