approaches to self management research

8/12/2019 Approaches to Self Management Research

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Chronic Condition Self-management

&

approaches to research and evaluation

Peter HarveyThe University of AdelaideSchool 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 anageing population

• expanding consumer involvement, demand,choice and power in health systems

• new partnerships being encouraged betweenconsumers, carers and providers to managedemand 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 healthservices

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 weneeded…

a method of facilitating a patient-centred care planning approach

a measure of patient self-management skill and ability and anindication 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 scoreimprovements 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 todetermine areas of patient need for education andtraining and as an aid to care planning

• a tool for measuring patient self-managementknowledge and ability

…the scale may eventually have other questions to cover thedomains of knowledge, skill, symptom management, ability to

monitor and manage conditions



Components

• 12 questions about patient illness managementknowledge and skill

• ‘self -reported’ rating by patient initially (0-8)

• structured ‘Cue & Response’ interview & rating, byhealth professional, of patient skills and abilities (cf self-

rating scores)

• differences in scores highlight/identify areas fordevelopment, education and training



Examples of Cue & Response interview

What do you know about your health condition andits cause?

What do you understand could happen to you withthis 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 Pt1 Pt2 Pt3 Pt4 Pt change Hp1 Hp2 Hp3 Hp4 Hp change

1 5.31 6.02 6.29 6.52 1.21 4.7 5.56 6 6.32 1.62

2 5.69 6.29 6.24 6.45 0.76 5.4 6.27 6.65 6.82 1.42

3 7.65 7.71 7.66 7.21 -0.44 7.19 7.18 7.04 7.06 -0.13

4 6.37 6.61 6.4 6.72 0.35 6.77 6.93 7.13 7.07 0.3

5 7.61 7.43 7.46 7.51 -0.1 7.59 7.65 7.71 7.77 0.18

6 5.97 6.22 6.19 6.49 0.52 5.53 6.57 6.47 6.94 1.41

7 3.98 4.14 4.58 4.93 0.95 4.23 5.5 5.98 6.63 2.4

8 6.03 6.48 6.49 6.62 0.59 5.7 6.27 6.55 6.82 1.12

9 6.4 6.87 6.89 7.03 0.63 5.98 6.55 6.64 6.92 0.94

10 5.22 5.88 5.69 5.81 0.59 5.43 6.26 6.34 6.58 1.15

11 5.62 6 6 5.94 0.32 5.97 6.6 6.5 6.63 0.66

12 5.84 6.24 6.09 5.94 0.1 5.88 6.47 6.48 6.63 0.75

NB scoring completed without reference to previous ratings!



Question 1 – patient knowledge



Distribution Tests…Question 1…

0

. 1

. 2

. 3

-4 -2 0 2 4slope

Kernel density estimate

Normal density

Distribution of esimated slopes (Q1)



Distribution Tests…Question 1…

0

. 5

1

1

. 5

4 4.5 5 5.5 6intercept

Kernel density estimate

Normal density

Distribution of esimated intercepts (Q1)



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 improvedduring 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 i it



GP visits (4 points)

0 1 2 3

time

4.60

4.80

5.00

5.20

P r e d i c t e d



Hospital admission (4 points)

0 1 2 3

time

0.25

0.30

0.35

0.40

P r e d i c t e

d



Specialist visits (4 points)

0 1 2 3

time

0.90

1.00

1.10

P r e d i c t e d



Service access summary table

Service Type baseline 6 months 12 months 18 months p value

mean predicted hospital visits 0.44 0.27 0.26 0.21 0.005

mean predicted GP visits 5.33 4.86 4.63 4.84 0.040

mean predicted specialist visits 1.13 1.18 0.88 0.86 0.027

Oth



Other measures (Stanford 2000)

improved p value

general health yes 0.021

fatigue no 0.520

pain yes (s lightly) 0.040

level of frustration with illness yes 0.008

fear about the future and illness yes 0.003

level of worry yes 0.039

shortness of breath no 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 & ExecutiveSummary. Sydney: Australian Government Department of Health and Ageing; 2005 November.

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

i li ti

http://www.health.gov.au/intenet/wcms/publishing.nst/Content/chronicdisease-nateval








implications

• potential of self-rating scales to be used in morepreventive health care programmes (eg the ATNCentre for Metabolic Fitness Studies)

• what are the cost-benefits of self-managementprogrammes

• need more randomised controlled studies ofoutcomes (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 HealthCare Initiative - Final Technical Report. Sydney: Australian GovernmentDepartment 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 HealthCare initiative - Final Report & Executive Summary. Sydney: AustralianGovernment 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, peereducators, 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 insupporting participants

• need for ongoing support and renewal forvolunteer 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



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 healthcare 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 datatracking for patients involved in care planning from theCOAG 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 AHWin 3 pilot communities

• APY Lands CCSM

• CRCAH funding to investigate aspects of CCSM includingcare planning, organizational change and impact of LIFEprogramme

• economic impact of changes to CDEP in APY Lands

• introduction of CCSM coordinator in AHCSA with comand 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!

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