Chronic disease self-management education programs: challenges ahead

♦ Chronic disease self-management education programs aim to empower patients through providing information and teaching skills and techniques to improve self-care and doctor–patient interaction, with the ultimate goal of improving quality of life.

♦ The recent 2006–07 federal budget allocated an unprecedented $515 million over 5 years for activation of patient self-management activities, commencing this financial year.

♦ Previous attempts in other countries to incorporate self-management education activities into the health care sector have faced setbacks because of inadequate integration into primary care.

♦ Engagement of health care professionals and their endorsement of self-management activities is critical to success.

The Health Education Impact Questionnaire (heiQ): An outcomes and evaluation measure for patient education and self-management interventions for people with chronic conditions

Objective: This paper describes the development and validation of the Health Education Impact Questionnaire (heiQ). The aim was to develop a user-friendly, relevant, and psychometrically sound instrument for the comprehensive evaluation of patient education programs, which can be applied across a broad range of chronic conditions.

Methods: Item development for the heiQ was guided by a Program Logic Model, Concept Mapping, interviews with stakeholders and psychometric analyses. Construction (N = 591) and confirmatory (N = 598) samples were drawn from consumers of patient education programs and hospital outpatients. The properties of the heiQ were investigated using item response theory and structural equation modeling.

Results: Over 90 candidate items were generated, with 42 items selected for inclusion in the final scale. Eight independent dimensions were derived: Positive and Active Engagement in Life (five items, Cronbach's alpha (α) = 0.86); Health Directed Behavior (four items, α = 0.80); Skill and Technique Acquisition (five items, α = 0.81); Constructive Attitudes and Approaches (five items, α = 0.81); Self-Monitoring and Insight (seven items, α = 0.70); Health Service Navigation (five items, α = 0.82); Social Integration and Support (five items, α = 0.86); and Emotional Wellbeing (six items, α = 0.89).

Conclusion:The heiQ has high construct validity and is a reliable measure of a broad range of patient education program benefits.

Practice Implications: The heiQ will provide valuable information to clinicians, researchers, policymakers and other stakeholders about the value of patient education programs in chronic disease management.

Does self-management lead to sustainable health benefits in people with arthritis? A 2-year transition study of 452 Australians.

Objective: To evaluate the Arthritis Self-Management Course (ASMC) when applied in a nationwide context.

Methods: Four hundred fifty-two people who participated in the ASMC across Australian states took part in a longitudinal followup study. ASMC is a 6 week, 2 h group educational program designed to assist people with chronic illness to better manage their condition. Measures of program effectiveness included health status and service utilization. Data were collected on 3 occasions: before intervention (baseline) and 6 months and 2 years after the program.

Results: Several indicators of health status showed improvement at 6 months following the ASMC. These included reduction in pain (4%; p < 0.001), fatigue (3%; p < 0.01), and health distress (12%; p < 0.001) as well as increase in self-efficacy (6%; p < 0.001). Increased self-efficacy was a significant predictor of positive change in health status. Health-related behaviors such as aerobic exercise also increased, with the proportion of people who did little or no exercise decreasing by up to 8%. These changes were sustained at 2 years. There was an increase in use of analgesics at 6 months and an increase in use of nonsteroidal antiinflammatory drugs at 2 years. No changes in healthcare utilization (physician visits, allied health visits, and hospitalizations) were observed.

Conclusion: The ASMC is a widely applied program in which participants benefit through a reduction in pain, fatigue, and health distress. Although the absolute changes in health status are small, the low cost and wide application of the intervention suggests the program may have a substantial public health effect.

A critical look at the role of self-management for people with arthritis and other chronic diseases

Most patients with chronic conditions, such as osteoarthritis, only have contact with healthcare professionals for a few hours over the course of a year. Good self-management programs are, therefore, critical for patients to cope with their conditions on a daily basis. Drs Osborne, Jordan and Rogers discuss the importance of engaging patients, clinicians and policymakers in the development and implementation of self-management programs.

Enhancing patient engagement in chronic disease self-management support initiatives in Australia : the need for an integrated approach

♦ Although emphasis on the prevention of chronic disease is important, governments in Australia need to balance this with continued assistance to the 77% of Australians reported to have at least one long-term medical condition.

♦ Self-management support is provided by health care and community services to enhance patients’ ability to care for their chronic conditions in a cooperative framework.

♦ In Australia, there is a range of self-management support initiatives that have targeted patients (most notably, chronic disease self-management education programs) and health professionals (financial incentives, education and training).

♦ To date, there has been little coordination or integration of these self-management initiatives to enhance the patient–health professional clinical encounter.

♦ If self-management support is to work, there is a need to better understand the infrastructure, systems and training that are required to engage the key stakeholders — patients, carers, health professionals, and health care organisations.

♦ A coordinated approach is required in implementing these elements within existing and new health service models to enhance uptake and sustainability.

Supporting self-management of chronic health conditions : Common approaches

Objective : The aims of this paper are to provide a description of the principles of chronic condition self-management, common approaches to support currently used in Australian health services, and benefits and challenges associated with using these approaches.
Methods : We examined literature in this field in Australia and drew also from our own practice experience of implementing these approaches and providing education and training to primary health care professionals and organizations in the field.
Results : Using common examples of programs, advantages and disadvantages of peer-led groups (Stanford Courses), care planning (The Flinders Program), a brief primary care approach (the 5As), motivational interviewing and health coaching are explored.
Conclusions : There are a number of common approaches used to enhance self-management. No one approach is superior to other approaches; in fact, they are often complimentary.
Practice implications : The nature and context for patients’ contact with services, and patients’ specific needs and preferences are what must be considered when deciding on the most appropriate support mode to effectively engage patients and promote self-management. Choice of approach will also be determined by organizational factors and service structures. Whatever self-management support approaches used, of importance is how health services work together to provide support.

The emotional context of self-management in chronic illness: A qualitative study of the role of health professional support in the self-management of type 2 diabetes

Background: Support for patient self-management is an accepted role for health professionals. Little evidence exists on the appropriate basis for the role of health professionals in achieving optimum self-management outcomes. This study explores the perceptions of people with type 2 diabetes about their self-management strategies and how relationships with health professionals may support this.

Methods: Four focus groups were conducted with people with type 2 diabetes:  two with English speaking and one each with Turkish and Arabic-speaking. Transcripts from the groups were analysed drawing on grounded hermeneutics and interpretive description.

Results: We describe three conceptually linked categories of text from the focus groups based on emotional context of self management, dominant approaches to self management and support from health professionals for self management. All groups described important emotional contexts to living with and self-managing diabetes and these linked closely with how they approached their diabetes management and what they looked for from health professionals. Culture seemed an important influence in shaping these linkages.

Conclusion: Our findings suggest people construct their own individual self-management and self-care program, springing from an important emotional base. This is shaped in part by culture and in turn determines the aims each  person has in pursuing self-management strategies and the role they make available to health professionals to support them. While health professionals'  support for self-care strategies will be more congruent with patients' expectations if they explore each person's social, emotional and cultural circumstances, pursuit of improved health outcomes may involve a careful balance between supporting as well as helping shift the emotional constructs surrounding a patient life with diabetes.

When the whole 'bloke' thing starts to crumble : men's access to chronic illness (arthritis) self management programs

This thesis explores the issue of men's access to chronic illness self management programs from a social constructionist perspective. A combination of research methodologies was used; a quantitative analysis to confirm gender differences in levels and patterns of service use; a qualitative analysis to gain an increased understanding of the factors affecting men's access; and a trial to test the application of the research findings. The clients and services of Arthritis Victoria were chosen as the setting for this research. The quantitative analyses were conducted on contingency tables and odds ratios and confirmed that men were under-represented as service users. The analyses also identified gender differences in patterns of service use. The qualitative analysis was based on a series of in-depth, semi-structured interviews. It was undertaken from a grounded theory approach to allow for the development of theoretical explanations grounded in the data. It was found that men's decisions to access chronic illness self management programs were strongly influenced by dominant social constructions of masculinity which constrained help-seeking and health management behaviour. However, the restrictive influence of hegemonic masculinity was progressively undermined by the increasing severity of the chronic condition until a crisis point was reached in terms of the severity of the condition or its impact on lifestyle. This resulted in a reformulation or rejection of hegemonic masculinity. The described conceptual framework was consistent for men from diverse social groupings, although it appeared less prominent in both younger and older men, suggesting that dominant social constructions of masculinity have the greatest influence on health decisions during the middle stage of adulthood when work and family obligations are greatest. The thesis findings informed the development of some guiding principles for reviewing the structure and delivery of chronic illness self management services for men. The guiding principles will have direct application in the planning of Arthritis Victoria programs, and implications for other chronic illness self management programs in Australia, and also in Western countries with a similar health and sociocultural setting to Australia.

Effectiveness of a community-based osteoporosis education and self-management course : a wait list controlled trial

Summary : Osteoporosis is an increasing burden on individuals and health resources. The Osteoporosis Prevention and Self-Management Course (OPSMC) was designed to assist individuals to prevent and manage osteoporosis; however, it had not been evaluated in an Australian setting. This randomised controlled trial showed that the course increased osteoporosis knowledge.
Introduction and hypothesis : Osteoporosis is a major and growing public health concern. An OPSMC was designed to provide individuals with information and skills to prevent or manage osteoporosis, but its effectiveness has not previously been evaluated. This study aimed to determine whether OPSMC attendance improved osteoporosis knowledge, self-efficacy, self-management skills or behaviour.
Materials and methods : Using a wait list randomised controlled trial design, 198 people (92% female) recruited from the community and aged over 40 (mean age = 63) were randomised into control (n = 95) and intervention (n = 103) groups. The OPSMC consists of four weekly sessions which run for 2 h and are led by two facilitators. The primary outcome were osteoporosis knowledge, health-directed behaviour, self-monitoring and insight and self-efficacy.
Results : The groups were comparable at baseline. At 6-week follow-up, the intervention group showed a significant increase in osteoporosis knowledge compared with the control group; mean change 3.5 (p < 0.001) on a measure of 0–20. The intervention group also demonstrated a larger increase in health-directed behaviour, mean change 0.16 (p < 0.05), on a measure of 0–6.
Conclusion : The results indicate that the OPSMC is an effective intervention for improving understanding of osteoporosis and some aspects of behaviour in the short term.

Getting your life back on track after stroke : a phase II multi-centered, single-blind, randomized, controlled trial of the Stroke Self-Management Program vs. the Stanford Chronic Condition Self-Management Program or standard care in stroke survivors

Background Self-management is seen as a primary mechanism to support the optimization of care for people with chronic diseases such as symptomatic vascular disease. There are no established and evidence-based stroke-specific chronic disease self-management programs. Our aim is to evaluate whether a stroke-specific program is safe and feasible as part of a Phase II randomized-controlled clinical trial.
Methods Stroke survivors are recruited from a variety of sources including: hospital stroke services, local paper advertisements, Stroke South Australia newsletter (volunteer peer support organization), Divisions of General Practice, and community service providers across Adelaide, South Australia. Subjects are invited to participate in a multi-center, single-blind, randomized, controlled trial. Eligible participants are randomized to either;
• standard care,
• standard care plus a six week generic chronic condition self-management group education program, or,
• standard care plus an eight week stroke specific self-management education group program.
Interventions are conducted after discharge from hospital. Participants are assessed at baseline, immediate post intervention and six months.
Study Outcomes The primary outcome measures determine study feasibility and safety, measuring, recruitment, participation, compliance and adverse events.
Secondary outcomes include:
• positive and active engagement in life measured by the Health Education Impact Questionnaire,
• improvements in quality of life measured by the Assessment of Quality of Life instrument,
• improvements in mood measured by the Irritability, Depression and Anxiety Scale,
• health resource utilization measured by a participant held diary and safety.

Conclusion The results of this study will determine whether a definitive Phase III efficacy trial is justified.

Chronic disease self-management programs : perspectives on enablers and barriers to GP and patient engagement

Aims & rationale/Objectives : Chronic disease self-management programs (CDSMP) are increasingly being integrated into the health system to improve the care of people with chronic conditions. Despite activity at both policy and program levels, GPs as the 'gatekeepers' to the health system have generally not been well informed or engaged in this process. This study, in collaboration with 3 Victorian Divisions of General Practice, sought both GP and patient perspectives on enablers and barriers to engagement in self-management programs.
Methods : Interviews were conducted with GPs (n=20) and consumers (n=45) purposefully recruited from metropolitan and rural Victoria, representing key demographics of interest including low socioeconomic areas.
Principal findings : Lack of education/information and uncertainty about the effectiveness of self-management programs were key barriers for both GP and patient engagement. Programs that were sustainable and utilised existing community resources were viewed as enablers to increase uptake. GP and patient preferences for disease specific or generic CDSMP differed.
Discussion : Outcomes from the recent Council of Australian Governments' meeting suggest that self-management will be a centerpiece in forthcoming chronic disease initiatives. International evidence has highlighted the need for GP and patient engagement as critical in ensuring the recruitment of a critical mass of individuals to participate in CDSMP to ensure the sustainability of such initiatives. Insight from this study indicates that GPs and patients are not well informed about self-management, have different preferences to current policy trends and identifies several other barriers which need to be addressed if CDSMP are to be successful.
Implications : Identification of barriers and enablers of GP and patient engagement in self-management is essential in shaping current policy initiatives and delivery of future programs. This is supported by international evidence which indicates strongly that GP engagement in particular is crucial to the success of these programs.
Presentation type : Paper

To integrate or not to integrate? Future considerations for chronic disease self-management programs in the health care system

Objective: The growing burden of chronic disease and the increasing realisation that the current health system is ill equipped to deal with this trend has resulted in a health policy shift away from the traditional medical model to a more patient centred approach. As such, chronic disease self-management programs (CDSMP) have emerged as a potentially important component within this approach. Policy and program trends at the international level highlight several critical factors that need to be considered by governments and health care providers alike if CDSMP are to be integrated within the broader health system. This study reviewed international and local policy literature and sought perspectives from key stakeholders to determine the value and potential for integrating a generic group-based CDSMP into the care continuum.
Method: Prominent self-management policies were identified through a comprehensive literature search. Interviews were conducted with policy makers across Australia (n=20), health practitioners (n=20) and consumers (n=42) purposefully recruited from metropolitan and rural Victoria, representing key demographics of interest including low socioeconomic areas.
Results: Whilst CDSMP were viewed as having significant potential to be integrated into the health sector it was identified that the delivery and content of CDSMP needs to be flexible in order to address the needs of people across the disease, age and care continuums. Critical issues to be addressed if CDSMP are to be successfully integrated include increasing the profile of self-management; actively engaging and training health practitioners in self-management and overcoming system barriers such as lack of integrated referral pathways and networks.
Discussion: Policy directions at the national level suggest that self-management will be a centrepiece in forthcoming chronic disease initiatives. International evidence has highlighted the requirement for a ‘suite’ of programs to adequately cater to different stages of the disease continuum, age groups, ethnic backgrounds and sociogeographical areas. Furthermore engagement with key stakeholders (particularly GPs) is identified as critical to ensure the successful integration of CDSMP into the health system.
Conclusion: Evidence suggests that CDSMP is an important facet in improving care of people with chronic conditions. Findings from this study suggest that current infrastructure and policy direction, which have been found to be critical factors in facilitating integration of CDSMP into the health sector, are either absent or inadequate in Victoria. CDSMPs are currently lacking a sustainable workforce, referral infrastructure and specific policy. Such factors need to be addressed before the integration of CDSMP can be considered across the healthcare continuum in Victoria.