Chronic disease self-management education programs

Where should Victoria go?

Joanne Jordan BA, BSc, MPHResearch Fellow

AFV Centre for Rheumatic DiseasesThe University of Melbourne

jjordan@unimelb.edu.au

Focus

• To determine the value of and potential for the integration of chronic disease self-management education programs into the care continuum

• International policy review• Local (Australian centric) policy review• Interviews with key stakeholders, GPs and

consumers

Background

• Impact of chronic disease in Australia:- >70% of disease burden

• Health system geared to acute conditions

• Deficiencies in patient care- Lack of education & support for self-

management- Lack of ongoing and proactive care

Background

• Seeking alternative ways to improve treatment quality and patient satisfaction

• Policy shift:Medical didactic model Patient centred care

Chronic disease self-management has emerged as an important component within the

patient centred care approach

What is self-management?

• Consideration of: - the individual with the chronic condition- their family and carers- health professionals

- Involves a holistic approach and acknowledging

- medical - psycho-social - cultural aspects

- Aims to empower individuals

Putting self-management into context

• Self-management is 1 component within chronic disease management

• Focus on formal self-management education programs to help assist patients to engage in self-care

Self-management education interventions

Type of intervention Examples

Individual

1:1 face-to-face consultation

Doctor/health professional

1:1 telephone coaching

COACH

Internet individual course

NSW Arthritis Foundation

Internet group course Stanford & NHS EPP partnership

Group – ongoing cycle Rehabilitation

Group – formal/structured

CDSMP

Written information NGOs / Clinic

Public Health

TV/multi-media Back campaignQUIT, TAC

Stanford CDSMP• Group based format• Conducted over 6

weeks, 2.5 hours per week

• Led by health professionals/peer leaders

• Highly structured course

Policy focus:

• National Chronic Disease Strategy (NCDS)

- Self-management identified as one of four key action areas

- Self-care is important to manage chronic disease and supports need to be implemented at all levels of the health system

- Need for programs, initiatives to develop and enhance self-management

Self-management education programs

Program focus:

• Sharing Health Care Initiative Demonstration Projects

- $36.2 million initiative (2001-2004)

- Explored suitability of chronic condition self-management models within Australian setting

Policy focus cont…

• Australian Better Health Initiative (COAG)

• $500 million over 4 years for chronic disease prevention & management

- Focus on programs to actively encourage patients to self-manage their condition

• $14.8 million over 4 years to fund awareness & education self-management of arthritis and osteoporosis

The way forward?

Integration of CDSMP into the care continuum

Lessons to be learnt from: Policy & program trends at

the international level

International trends in CDSMP

• Focus on generic programs

• UK government leader in field

• “Expert Patients Programme”• Anglicised version of Stanford CDSMP

implemented throughout National Health Service

• £40 million spent since 2001

• Canada, Germany, Sweden, Denmark • less advanced re: policy and programs

Self-management policies

1. Stand alone • e.g. Expert Patients Programme (UK)

2. Incorporated as part of a chronic disease management strategy• generic e.g. British Columbia (Canada) • disease specific e.g. USA Arthritis Action Plan

3. Legislation • e.g. Germany

• Disease Management Programs

International challenges with the integration of CDSMP

• Recruitment of consumers

• Engagement with health professionals

• Workforce sustainability

Recruitment of consumers

1. Recruitment and retention of a critical mass of individuals has posed challenges

• Social marketing

- time and resource intensive- reach a small proportion of the target

population*concern that some programs might increase health disparities

• EPP moving to Community Interest Company- develop, market and deliver new and

diverse s-m programs

Health professional engagement

• Health professionals crucial to the viability of programs

• Primary conduits for patients with chronic conditions to enter self-management programs

−Gatekeepers to the health system

Barriers to health professional engagement

• Wariness of new initiatives

• Lack of structured and uniform referral mechanism

• Uncertainty of benefits to patients

• Need for local evidence relating to patient outcomes and sustainability of programs

Workforce Sustainability

• Complexities with peer led programs

−Position of peer leaders and trainers in the health sector

−Administration/resources/support

Summary: Issues at the international level

1. Integration of CDSMP into the health sector is in its infancy

2. Recruitment and retention of a critical mass of individuals (patients and leaders) has posed challenges

3. Programs only reach a small proportion of the target population

4. Engagement with health professionals

4. Translation of community programs to the health sector

− Workforce issues

Summary: Issues at the international level

Local policy context

Australia Policy Initiatives

• Strong policy direction

• National Chronic Disease Strategy

• Sharing Health Care Initiative Demonstration Projects

• Australian Better Health Initiative

State policy overview

Comparison of State Policies

VIC NSW

SA QLD TAS WA

Overarching chronic disease

strategy

Specific self-management

strategy

Specific disease groups

Identification of specific self-management

models

Place of self-management within care continuum

1.HARP2.Early Intervention in

Chronic Disease in Community Health Services Initiative

What is the extent of integration of CDSMP within Australia?

Short term trials or demonstration projectse.g. Sharing Health Care Initiative

Sharing Health Care Initiative (SHCI)

• 1999 Enhanced Primary Care Package- Shift from acute to primary care

• SHCI considered a range of generic CDSM models for integration into wider health care system

• 12 demonstration projects (8 focused on for SHCI evaluation)

Sharing Health Care Initiative (SHCI)

• Evaluation (DHA)

−A lot enthusiasm: contribution

−GP engagement limited• Inability to capitalise on MBS / EPC items

relating to chronic disease to assist with referral process

• Social marketing strategies predominant

SHCI Evaluation: Barriers & Enablers

• Barriers to patient participation- dissemination of information- transport- ill health- too busy/disinterested

• Successful strategies • targeted specific groups and • modified content/delivery to suit needs

e.g. CALD

Integration themes – international & local

1. Profile of self-management needs to be raised within health sector

2. Engagement of health professional is essential

3. Structured referral pathways and networks across the care continuum are required

4. Programs need to be flexible in both content and delivery

To integrate or not to integrate?

• Self-management has the potential to make a profound contribution to health and wellbeing across the care continuum

• However it is currently unknown if programs are meeting the needs of consumers & health professionals in terms of:

• content, • accessibility, and • reach

Feedback at the grassroots level

Consultation with Victorian GPs & Consumers

Qualitative study

• Methods

- Interviews : 17 GPs and 43 consumers

- Purposeful sampling employed

- Consumers : GPs, Rheumatologists and existing research database

- GPs recruited via 3 Div of General Practices (Northern, Dandenong & South Gippsland)

Common Barriers (GPs & Consumers)

“Lack of knowledge by health professionals, if it was advertised in GP surgeries, hospitals, specialists telling people about it … just make people aware of these programs …”

• Consumer perceptions that health professionals should advertise or spread information

“GPs need to know how beneficial or valuable these programs are so they are able to assess whether this could potentially benefit patients”

• Lack of general awareness and knowledge

Barriers (GPs)

“Courses come and go or organisations delivering these programs fold … GPs are not well informed about local programs available to them …”

• Poor sustainability of locally available programs

“GP is looking for how things are progressing … is there any monitoring of the condition or the persons behaviour so he/she knows what the patient is getting”

• Absence of a feedback mechanism

Common Enablers (GPs & Consumers)

“Programs need to be local, close to home or the workplace, provided at times that are accessible and participants should be able to bring partners or family members”

• Programs that are locally based, easily accessible

“If the GP knows the program works and the evidence is there … it is perceived that this will enhance referral of patients to the program”

• Broad dissemination of information about CDSMP

Enablers (GPs)

“Really easy seamless referral system, that is probably number 1 to be able to say do this, you ring there and it will all happen and to know how it happens”

• Convenient and structured referral process

“Early on people may need more one-to-one support, for example, diabetes … then there could be further information and learning of self-management skills ...”

• Flexibility in both delivery content and format to accommodate different disease requirements of patients

Enablers (GPs)

“Feedback from consumers is really important … very much sways us into using the service more … and evidence … is there some evidence by reputable research …”

• Convincing evidence base with formal quality assurance/accreditation process

Enablers (Consumers)

“Well I think all GPs should know about it and then the GP, if they know their patient well enough and have a good rapport should be able to say I think this should benefit you and should encourage you to go along … really that is the basis for that, you go to a GP who is the first port of call …”

Key factor for consumer participation is

recommendation from health professional

What needs to be done to take self-management forward?

SELF-MANAGEMENT SERVICE IMPROVEMENT FRAMEWORK

Framework – 4 elements

National policy

(NCDS)

State policy

Policy integration

Health service delivery

Self-management interventions

Community

Policy integration

Key actions

1. Overarching strategy outlining consistent approach to self-management across health sector

2. Recommendation of specific self-management interventions to be utilised across care and disease continuum

3. Links between NCDS and other state initiatives to prioritise self-management within the health sector

National policy

(NCDS)

State policy

Health service

delivery

Self-management interventions

Community

Health service delivery

Key actions

1. Training & education of all healthcare providers in self-management principles

2. Multiple referral pathways

3. Sustainable workforce

4. Resources

National policy

(NCDS)

State policy

Health service

delivery

Self-management interventions

Community

Self-management interventions

Key actions

1. Flexibility in delivery, content and form

2. Local community context

3. Feedback mechanism between program providers and health professionals on patient progress

4. Evaluation/Quality assurance

National policy

(NCDS)

State policy

Health service

delivery

Self-management interventions

Community

Evaluation & Quality Assurance

• Health Education Impact Questionnaire (heiQ)

• Piloted as national quality and monitoring system across self-management programs in Australia

• Broad range of self-management education interventions

• Benchmark and provide national data on effectiveness of programs

Community

Key actions

1. Health promotion tailored strategies

2. Variety of program formats

3. Local settings

National policy

(NCDS)

State policy

Health service

delivery

Self-management interventions

Community

Framework – 4 elements

National policy

(NCDS)

State policy

Policy integration

Health service delivery

Self-management interventions

Community

Policy Recommendations

Acknowledgements

• Joan Nankervis• Bella Laidlaw• Dr Caroline Brand (principal

investigator)• Dr Richard Osborne (principal

investigator)

Thank you

jjordan@unimelb.edu.au