Chronic Condition Self-management

&
approaches to research and evaluation

Peter Harvey The University of Adelaide School of Population Health and Clinical Practice

Overview
chronic condition self-management processes PIH goal setting, monitoring & feedback

Stanford peer-led CCSM programme

Aboriginal community involvement learning & health outcome changes

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

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

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

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

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 selfmanagers to be able to explore correlations between PIH score improvements and changes in other indicators (eg S2000)

Main interventions

Stanford CCSM programme

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

The PIH Approach

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

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 selfrating scores)

differences in scores highlight/identify areas for development, education and training

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?

patient age profile Whyalla group only!

illness profiles

n = 176 Male 67 Female 109 Illness Category frequency percentage frequency percentage diabetes 26 38.81% 36 33.03% arthritis 31 46.27% 70 64.22% respiratory 22 32.84% 30 27.52% cardiovascular 49 73.13% 68 62.39% renal 5 7.46% 2 1.83% depression 7 10.45% 14 12.84% osteoporosis 4 5.97% 22 20.18%

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

data table Whyalla patients

(n =176)

PIH Mean scores (baseline to 18 months) for Patients and Health Providers

Domain
1 2 3 4 5 6 7 8 9 10 11 12

Pt1 5.31 5.69 7.65 6.37 7.61 5.97 3.98 6.03 6.4 5.22 5.62 5.84

Pt2 6.02 6.29 7.71 6.61 7.43 6.22 4.14 6.48 6.87 5.88 6 6.24

Pt3 6.29 6.24 7.66 6.4 7.46 6.19 4.58 6.49 6.89 5.69 6 6.09

Pt4 Pt change 6.52 1.21 6.45 0.76 7.21 -0.44 6.72 0.35 7.51 -0.1 6.49 0.52 4.93 0.95 6.62 0.59 7.03 0.63 5.81 0.59 5.94 0.32 5.94 0.1

Hp1 Hp2 Hp3 Hp4 Hp change 4.7 5.56 6 6.32 1.62 5.4 6.27 6.65 6.82 1.42 7.19 7.18 7.04 7.06 -0.13 6.77 6.93 7.13 7.07 0.3 7.59 7.65 7.71 7.77 0.18 5.53 6.57 6.47 6.94 1.41 4.23 5.5 5.98 6.63 2.4 5.7 6.27 6.55 6.82 1.12 5.98 6.55 6.64 6.92 0.94 5.43 6.26 6.34 6.58 1.15 5.97 6.6 6.5 6.63 0.66 5.88 6.47 6.48 6.63 0.75

NB scoring completed without reference to previous ratings!

Question 1 patient knowledge

Distribution TestsQuestion 1
Distribution of esimated slopes (Q1)
.3 Density 0
-4

.1

.2

-2

0 slope Kernel density estimate Normal density

Distribution TestsQuestion 1
Distribution of esimated intercepts (Q1)
1.5 Density 0
4

.5

4.5

5 intercept Kernel density estimate Normal density

5.5

PIH conclusions re learning outcomes

both patient and provider PIH scores have improved from baseline to 18 months these improvements indicate that patient selfmanagement 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

GP visits

(4 points)

5.20

Pr edicted

5.00

4.80

4.60 0 1 2 3

time

Hospital admission

(4 points)

0.40

Pr edicted

0.35

0.30

0.25

time

Specialist visits

(4 points)

1.10

Pr edicted

1.00

0.90

time

Service access summary table

Service Type
mean predicted hospital visits mean predicted GP visits mean predicted specialist visits

baseline
0.44 5.33 1.13

6 months 12 months 18 months p value

0.27 4.86 1.18 0.26 4.63 0.88 0.21 4.84 0.86 0.005 0.040 0.027

Other measures (Stanford 2000)

Random effects - unstructured covariance model for change over time (Stanford 2000 Health Survey)

general health fatigue pain level of frustration with illness fear about the future and illness level of worry shortness of breath

improved yes no yes (slightly) yes yes yes no

p value 0.021 0.520 0.040 0.008 0.003 0.039 0.121

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.

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)

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)

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.

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)

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 biasonly good self-managers tend to engage with the process?? males difficult to engage in CCSM programs great variations in the level of participation

CCSM for Aboriginal people

adaptation of the Stanford process early impacts (changes to delivery model) integrated careCCSM 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

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

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

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

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.

END!