Optimising care for people with chronic disease

Chronic disease self-management emerged as an organised, formal entity in Australia in the 1980s, when a specific group-based program was introduced from the United States. This program, the Stanford Arthritis Self-Management Course, was promulgated in Australia and other countries by its creator, Professor Kate Lorig of Stanford University. The program showed much early promise, particularly with its dissemination and uptake by an enthusiastic non-government sector. Over subsequent years it has matured, and many other programs endeavouring to support patients to engage in self-management have been developed. In some ways, chronic disease self-management has become mainstream.1-3 In the late 1990s, the Australian Government Department of Health and Ageing began to invest large sums into exploring the utility of a wide range of chronic condition self-management models that could be suitable for the Australian health care system. This was facilitated through a new policy, the Sharing Health Care Initiative, which was supported by a substantial budget of $36.2 million. This initiative included large demonstration projects using care planning, action planning, medication review, coaching, self-help groups, formal chronic disease self-management programs and other modes of self-management support. At around the same time in the United Kingdom, an even larger initiative came into being — the Expert Patients Programme, in which thousands of people with chronic conditions participated in self-management education programs. Some of the key insights from the Australian4 and UK5 experiences, and to a lesser extent concurrent US6 and Canadian7,8 reports, were that self-management education was most effective when programs were tailored to patients’ needs, and were undertaken in collaboration with and integrated into primary care. A further prominent finding was the need for a “critical mass” of patients with chronic conditions ready and able to take part in such programs.9 With a greater range of programs and tools and a renewed emphasis on patient-centred care, a range of innovative programs emerged across Australia at state government and community health levels. By the mid 2000s, a great deal of innovation had been generated in this field. However, given the vast distances across Australia, much re-invention of the wheel (or possibly “flat tyres”, in some cases) seemed to be happening. The 2006–07 Australian Budget announcement introduced the Council of Australian Governments (COAG) Australian Better Health Initiative. Within this $500 million package for the prevention and management of chronic disease, a key element was generating better patient self-management activities. To support Australian, state and territory governments, health care providers and consumers in the “operationalisation” of chronic disease self-management across the health care and community sectors, it was evident that there was a need for a forum to provide an opportunity for key stakeholders to exchange information and ideas, and to discuss innovative ways of providing chronic disease self-management support. The Centre for Rheumatic Diseases at the University of Melbourne, which has been involved in several such national research and evaluation projects and has established research collaborations in the UK, the US, Canada and Europe,3,8 was well placed to organise such an event. Within a matter of months, keynote speakers were assembled and a “standing-room only” conference of 400 people was held.10 Funding to conduct the conference was provided by the Australian Government Department of Health and Ageing and the Victorian Department of Human Services. Entitled “The way forward: chronic disease self-management in Australia”,10 the conference brought together national and international leaders in the field to discuss the state of play and, more importantly, where it needed to go. Some of the papers presented at the conference are presented in greater detail in this supplement.

Richard H Osborne DipApplBio, BSc, PhD

Self-management has the potential to reduce the burden of chronic disease — but it needs to be integrated into the health system

Stanton P Newman DPhil, DipPsych, FBPS

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.

Joanne E Jordan BSc, BA, MPH · Andrew M Briggs BSc(Physio)(Hons), PhD · Caroline A Brand BA, MPH, FRACP · Richard H Osborne DipApplBio, BSc, PhD

We examined research and implementation activities presented at the Centre for Rheumatic Diseases 2007 Conference and other selected literature to identify common themes and posit some “next steps” required to develop self-management programs in the Australian context. Self-management and self-management support are key aspects of optimal chronic disease care, and are effective if implemented appropriately. Health literacy is the foundation for self-management programs and should be fostered within the whole population. We should invest in research and evaluation of self-management because the evidence base is under-developed and inherently difficult to expand. Because patient, carer, clinician and organisational engagement with self-management and self-management support programs are uneven, we need to prioritise activities designed to engage known hard-to-reach groups. We should strive to improve integration of self-management into clinical, educational and workplace contexts. Education and psychological theories can help guide self-management support.

Nicholas J Glasgow MD, FRACGP, FAChPM · Yun-Hee Jeon BHSc(Nursing), MN, PhD · Stefan G Kraus BA, BEc · Carmen L Pearce-Brown RN, DipHSc, MCritCareN

Although there is evidence for the effectiveness of self-management support, there has been limited engagement of Australian general practice staff with self-management support provided by other services. Efforts to integrate self-management support into general practice have also been challenging, largely because of capacity constraints and the difficulties of incorporating it into existing work practices. A broader systemic approach is needed, including a collaborative approach between providers, a range of self-management support options, training of general practice staff, and changes to the organisation of services and the way in which they relate to each other. The expanding role of practice nurses, new models of integrated primary health care and changes to the role of the Divisions of General Practice present an opportunity for this to be incorporated “from the ground up”.

Mark F Harris FRACGP, MD · Anna M Williams BHlthSc, MPH · Sarah M Dennis MSc, PhD · Nicholas A Zwar MB BS, PhD · Gawaine Powell Davies BA(Hons), MHA

The Expert Patients Programme (EPP) is a central element of chronic disease management policy in the United Kingdom. It aims to deliver self-care support by developing peoples’ self-care skills, confidence and motivation to take more effective control over their long-term conditions. A large, national randomised controlled trial found that the EPP’s lay-led skills training was effective in improving self-efficacy and energy levels among patients with long-term conditions, and was likely to be cost-effective. Key questions remain as to whether existing outcome measures capture the core outcomes that are important to patients with long-term conditions. The development and evaluation of self-care support initiatives should take into account the extent to which self-care support initiatives can be integrated into peoples’ everyday lives, and the degree of fit with patients’ existing adaptations and strategies. Rather than being concentrated on a single course, central resources for self-management support should be directed at a variety of systems and interventions that are able to meet the wide range of needs of patients with chronic conditions.

Anne Rogers PhD · Anne Kennedy BSc, SRN, PhD · Peter Bower PhD · Caroline Gardner BSc · Claire Gately BSc, MSc · Victoria Lee PhD · David Reeves BSc, PhD · Gerry Richardson MSc, PhD

Osteoarthritis of the hip and knee is an increasingly common condition that is managed principally with lifestyle behaviour changes. Osteoarthritis management can be complex, as it typically affects older patients with multiple comorbidities. There is evidence that opportunities exist to improve uptake of evidence-based recommendations for care, especially for non-pharmacological interventions. The National Chronic Disease Strategy (NCDS) defines key components of programs designed to meet the needs of people with chronic conditions; one component is patient self-management. NCDS principles have been effectively integrated into chronic disease management programs for other conditions, but there is limited evidence of effectiveness for osteoarthritis programs. A comprehensive osteoarthritis management model that reflects NCDS policy is needed. Barriers to implementing such a model include poor integration of decision support, a lack of national infrastructure, workforce constraints and limited funding.

Caroline A Brand BA, MPH, FRACP

Despite the availability of a range of Australian self-management support programs targeting the individual patient and/or health professional, three-quarters of Australians have at least one long-term medical condition, suggesting that a more comprehensive public health approach is needed. Use of mass media to deliver community health messages is a well established public health strategy. It may enhance more targeted approaches with its ability to reach large numbers of people simultaneously, including those difficult to identify, high-risk groups and those difficult to reach through traditional medical delivery. By simultaneously influencing large numbers of people, well designed health messages have the potential to promote and maintain behavioural change over time. Back Pain: Don’t Take It Lying Down (1997–1999), a mass media campaign of the Victorian WorkCover Authority, can be seen as a prototype of a successful public health strategy designed to enhance people’s self-management abilities. One of the main messages of the campaign was that there is a lot you can do to help yourself, which emphasises shifting the responsibility of control onto the individual. The success of the campaign makes a compelling evidence-based case for using a similar strategy to enhance the self-management abilities of the population.

Rachelle Buchbinder MB BS(Hons), PhD, FRACP