Chronic disease self-management support: the way forward for Australia

The terms “health literacy”, “self-care”, “self-management” and “self-management support” are commonly used. Although a clear consensus on the meanings of these terms remains to be achieved, there is movement towards agreement. The constructs are all related and overlap. Recently, the relationships between self-care (taking responsibility for health of self, children and family), self-management (active participation of patients in their treatment to minimise impact of their condition) and self-management support (patient, health care practitioner, and health care system interventions designed to increase self-management behaviour) have been described.14 In this supplement, Jordan and colleagues stress the importance of patients having the capacity to participate in self-management and self-management support, capturing the connections between these constructs ("Enhancing patient engagement in chronic disease self-management support initiatives in Australia: the need for an integrated approach"; Box 4).15 Patients with chronic disease must be health literate — have the capacity to seek, access, comprehend and use health information and services.16

Researchers and evaluators encounter many challenges when assessing the effectiveness and cost-effectiveness of self-management programs.

Methodological challenges arise because of the complex and multifactorial nature of self-management interventions. Pragmatic randomised controlled trials can be undertaken, as illustrated by the evaluation of the Expert Patients Programme,17 but these are resource-intensive. Brand notes the “black box” nature of self-management interventions ("The role of self-management in designing care for people with osteoarthritis of the hip and knee"; Box 3).9 Although there are common elements in interventions across studies, there are also unique elements. Which elements contribute to any observed efficacy may be unknown. However, some elements are effective. Harris and colleagues report that patient education, distribution of educational material and motivational counselling are effective, and note that delivery in group settings enhances effectiveness (→ Chronic disease self-management: implementation with and within Australian general practice).10

Study designs need to account for comorbidity. In Australia, about 55% of people aged 65–84 years have five or more long-term conditions.18 Excluding these patients from self-management trials may reduce the generalisability of results; however, including them compounds the complexity of studies.

Study designs also need to account for the complex and dynamic interplay between factors related to patients, clinicians, the health system and those outside the health system, which bear on chronic disease management. For example, optimal chronic disease care delivery may be frustrated by a public transport timetable preventing access to an activity aimed at enhancing a patient’s self-management capacity.

In keeping with any trials of interventions designed for long-term use, self-management studies must consider the degree to which any observed effect at the end of the trial is sustained. Does a result observed at 6 months allow claims of efficacy to be extrapolated to 1 or more years?3 They also need to consider potential harms. Studies may not be powered to assess harms, with only observational data collected on these, if collected at all. Redman comments:

Once implemented, self-management programs should be evaluated with reliable and valid tools.19 The Health Education Impact Questionnaire (heiQ), which was developed in Australia, is one such tool suitable for applications for quality improvement purposes within a program and/or comparison of effectiveness between programs.20 Ongoing evaluation with such tools strengthens the evidence base.

Achieving engagement of patients, clinicians and organisations with self-management programs is challenging.

Particular patient groups are less engaged. For example, people with low levels of health literacy, of low socioeconomic status, or who are members of culturally and linguistically diverse communities may all struggle to engage with “standard” programs. Frail older people, with or without cognitive impairment, rely heavily on others for their daily activities. Engagement of their carers and families is important,21 but much of the focus of self-management programs to date has been directed at patients.

Self-management programs have often developed and/or been implemented in parallel to the direct provision of clinical services. For example, programs may be driven by research groups (eg, the AFV Centre for Rheumatic Diseases at the University of Melbourne) or by organisations such as Diabetes Australia.22 This may contribute to clinicians’ lack of awareness of programs, with the consequence that referrals from clinical practice are infrequent and non-systematic.

This parallel development contributes to problems at an organisational level as well. As Harris and colleagues point out, many Divisions of General Practice have contractual responsibilities with the Australian Government Department of Health and Ageing for the delivery of self-management programs.10 Similarly, various state and territory governments have specific self-management programs. For government and Division employees, there are clear accountabilities for the delivery of these programs. However, for both, the connections with other parts of the system are voluntary. For example, general practices usually run as private entities with no direct lines of accountability to Divisions or governments. This lack of clear accountability contributes to non-engagement.

From the patient perspective, obtaining chronic disease care from the health system often highlights areas of fragmentation. Consider the case of a person with type 2 diabetes, ischaemic heart disease and low socioeconomic status. The general practitioner and practice nurse are located in one health facility with appointment systems in place. The podiatrist, diabetes educator, dietitian and ophthalmologist are often each located in a separate health facility with separate appointment systems; pathology services and pharmacies are also separate. Information and communication systems are disjointed, and data entry is duplicated. Funding streams to support these activities are drawn from different public and private sources.

Jordan and colleagues report there has been a tendency for self-management programs and self-management support programs to develop as standalone activities, rather than as integral parts of the system.15 Harris and colleagues note this as a particular issue within primary care.10 Self-management programs are in danger of becoming another fragment in an already fragmented system. Self-management should be one component of service delivery within a broader framework of service redesign.9 This would require critical reflection on current approaches to health care delivery and re-engineering of workplace practices to facilitate the delivery of chronic disease care, including self-management support, while ensuring that other important activities, such as acute care, screening and review are not compromised.

Should there be increased efforts to integrate self-management support activities within other sectors? School curricula could be the focus for more material relevant to chronic disease prevention, management and the health system. For example, an asthma program in schools could be expanded to illustrate best use of the health system, contrasting the respective roles of general practice and emergency departments in asthma care. The workplace is another site in which self-management support activities could be developed. The Australian WorkHealth Program is piloting activities within the workplace aimed at enhancing self-management for arthritis.23

Health-literate patients’ active participation in their own care is central to good chronic disease care. Patients should gain increasing autonomy from “teachers” as they become more expert in self-management judgements and decisions. One might expect self-management pedagogical approaches to emphasise adult learning characteristics and developmental teaching principles in which the focus “is on the development of learners’ thinking, reasoning, and judgement”.24 However, didactic educational approaches have come to the fore in the development of self-management interventions.3 There are significant hurdles to overcome in order to achieve best educational practice self-management programs. For example, in already full curricula, clinicians will need specific educational training. Clinical settings will need to be designed to facilitate educational activities as well as clinical activities.

Self-management educational activities are directed at achieving behavioural change. It is not just educators who can contribute to achieving this goal. Psychological theories informing approaches to self-management have been identified,2,3 but there remains scope for their further development and better integration with educational, clinical and health services research.