Chronic Condition Self-management & approaches to research and evaluation Peter Harvey The University of Adelaide

1. Chronic Condition Self-management • & • approaches to research and evaluation • Peter Harvey • The University of Adelaide • School of Population Health and Clinical Practice

2. Overview • chronic condition self-management processes • PIH goal setting, monitoring & feedback • Stanford peer-led CCSM programme • Aboriginal community involvement • learning & health outcome changes

3. Context • escalating rates of chronic illness within an ageing population • expanding consumer involvement, demand, choice and power in health systems • new partnerships being encouraged between consumers, carers and providers to manage demand and share responsibility for health

4. SHC SA focus • rural & remote communities • people with complex & chronic illness • Aboriginal people > 35 years of age • non-Aboriginal people > 50 years of age • (diabetes, CVD, asthma, osteoporosis, arthritis) • 3 year demonstration project

5. SHC SA focus Integrated programme of… • patient centred care planning • coordinated service provision • health & lifestyle related information • follow-up, review and monitoring • peer-led self-management education • support groups

6. Goals… • increase access to & appropriate use of health services • improve patient self-management knowledge & skill • improve communication & collaboration between service providers, patients & carers • improve health related quality of life for patients

7. outcome measures we used the modified Stanford 2000 health survey to collect patient service ustilisation and health outcome data, but we needed… • a method of facilitating a patient-centred care planning approach • a measure of patient self-management skill and ability and an indication of key problem areas for patients • a way of determining which patients might be good self-managers • to be able to explore correlations between PIH score improvements and changes in other indicators (eg S2000)

8. Main interventions

9. Stanford CCSM programme

10. Programme Overview… • 6 week peer-led self-management programme • specially modified version for Aboriginal people • focus on… • understanding conditions and symptoms • sharing experiences • problem solving • setting health & behaviour related goals • monitoring and feedback • managing pain, fatigue and lifestyle problems • establishing sustainable support structures

11. The PIH Approach

12. The PIH process… • initially designed as an assessment tool to determine areas of patient need for education and training and as an aid to care planning • a tool for measuring patient self-management knowledge and ability …the scale may eventually have other questions to cover the domains of knowledge, skill, symptom management, ability to monitor and manage conditions

13. Components • 12 questions about patient illness management knowledge and skill • ‘self-reported’ rating by patient initially (0-8) • structured ‘Cue & Response’ interview & rating, by health professional, of patient skills and abilities (cf self-rating scores) • differences in scores highlight/identify areas for development, education and training

14. Examples of Cue & Response interview What do you know about your health condition and its cause? What do you understand could happen to you with this condition? (consequences) What do you understand about the symptoms of your condition?

15. patient age profile – Whyalla group only!

16. illness profiles

17. treatment of data …as continuous data… • scores (0-8) with higher scores as better scores • mean scores calculated across the 4 data collection points (baseline to 18 months) for each PIH domain • analysis for only those patients for whom we have a complete set (4 data collection points) • repeated measures with corroboration using intercept and slope method (mixed modeling) for each patient

18. data table – Whyalla patients (n =176) NB scoring completed without reference to previous ratings!

19. Question 1 – patient knowledge

20. Distribution Tests…Question 1…

21. Distribution Tests…Question 1…

33. PIH – conclusions re learning outcomes • both patient and provider PIH scores have improved from baseline to 18 months • these improvements indicate that patient self-management skills and abilities have improved during the SHC intervention • patients tend to score their improvements more cautiously than do providers • evidence from the national study (PWC) corroborates these local findings

34. GP visits (4 points)

35. Hospital admission (4 points)

36. Specialist visits (4 points)

37. Service access summary table

38. Other measures (Stanford 2000) Random effects - unstructured covariance model for change over time (Stanford 2000 Health Survey) NB similar results from the national (PWC) analysis for general health, distress, coping, social functioning, self efficacy & visits to hospital www.health.gov.au/intenet/wcms/publishing.nst/Content/chronicdisease-nateval PricewaterhouseCoopers. National evaluation of the Sharing Health Care initiative - Final Report & Executive Summary. Sydney: Australian Government Department of Health and Ageing; 2005 November.

39. implications • potential of self-rating scales to be used in more preventive health care programmes (eg the ATN Centre for Metabolic Fitness Studies) • what are the cost-benefits of self-management programmes • need more randomised controlled studies of outcomes (ie the proposed COPD study in SA)

40. discussion • the 14 point scale & PIH validation • results in other communities (cf USA Indigenous communities) • application to other illness groups (eg mental health self-management groups)

41. qualitative evaluation (SHCSA) SHCSA evaluation papers… • Fuller J. Sharing Health Care SA Qualitative Impact Evaluation Final Report. Adelaide: University of Adelaide; 2004. • Fuller J, Harvey PW, Misan G. Is client centred care planning for chronic disease sustainable? Experience from rural South Australia. Health and Social Care in the Community 2004;12(4):318-326. • PricewaterhouseCoopers. National Evaluation of the Sharing Health Care Initiative - Final Technical Report. Sydney: Australian Government Department of Health and Ageing; 2005. • PricewaterhouseCoopers. Sharing Health Care Initiative - final Report of the national evaluation (executive summary and discussion). Sydney: Commonwealth Department of Health and Ageing; 2005 June. • PricewaterhouseCoopers. National evaluation of the Sharing Health Care initiative - Final Report & Executive Summary. Sydney: Australian Government Department of Health and Ageing; 2005 November.

42. qualitative evaluation (SHCSA) • PWC national evaluation • process • impact • outcome • local evaluation process (SHCSA) • focus groups • key informant interviews (consumers, carers, peer educators, health professional and project staff)

43. key points • collaboration between competing providers • need GP involvement to make EPC work • importance of the role of carers and volunteers in supporting participants • need for ongoing support and renewal for volunteer groups • self-selecting bias…only good self-managers tend to engage with the process?? • males difficult to engage in CCSM programs • great variations in the level of participation

44. CCSM for Aboriginal people • adaptation of the Stanford process • early impacts (changes to delivery model) • integrated care…CCSM as part of the EPC and CIP processes • links to Healthy for Life programme • whole of community implications • the ‘social care plan’ – holistic assessment of health care needs

45. CCRE initiatives • focus on CCSM and prevention • training AHW and nurses to conduct local research • certificate 4 course in community research • use of EPC items (Pika Wiya Project) • Ceduna data tracking initiative (longitudinal data tracking for patients involved in care planning from the COAG trial period • point of care testing – clinical benefits of local testing as opposed to standard approach • care planning in Port Lincoln • implementing the LIFE programme in Port Lincoln

46. CCRE initiatives other connections • NPS evaluation of the QUM training programme for AHW in 3 pilot communities • APY Lands CCSM • CRCAH funding to investigate aspects of CCSM including care planning, organizational change and impact of LIFE programme • economic impact of changes to CDEP in APY Lands • introduction of CCSM coordinator in AHCSA with com and state funding • links to the ABHI to fund ongoing implementation

47. NH&MRC proposal • to investigate the clinical impacts of participation in CCSM training • compliance and behaviour change • lifestyle impacts • HbA1c, lipids, BMI and other core measure changes • AQoL – improvement in utility scores • the research model • wait list (delay) control • ethical implications • n ≥ 200 intervention patients for power • funding for 3 years to work in up to 6 communities including those involved in the CCRE programme

48. The CCSM Paradox…Harvey PW, Docherty B. Sisyphus and chronic disease self-management: health care and the self-management paradox. Australian Health Review 2007;31(2):184-192.

50. END!