In this paper, we reviewed self-management support approaches for patients with chronic conditions in 13 European countries. We find that, in general, self-management support remains relatively underdeveloped in Europe, though some countries appear further than others in implementing the key support components distinguished by the CCM, i.e. patient education, collaborative care planning, provision of self-management tools, and structured follow-up. This difference might be explained, in part, by facilitative factors in countries’ health system context, such as the financing context which might incentivise self-management support efforts, and/or to what can broadly be viewed as medical culture, including length of consultation , nature of doctor-patient communication , or interdisciplinary teamwork . At the same time, although there are differences in the ‘what, how, who and where’ of support activities across countries, there are considerable similarities as well. Important commonalities were: (1) the role of nurses as main support givers, which research has shown to lead to better outcomes for the chronically ill [44–46]; and (2) the setting of support activities in primary care, which is widely regarded as most suitable to serve as ‘medical home’ for chronically ill patients . Moreover, respondents from most countries reported on the presence of collaborative care planning and structured follow-up of patients’ self-management over time, as suggested by the CCM, although it is often unclear how (well) these activities are implemented in practice. Findings from recent international surveys of patients’ experiences with chronic care suggest that there are still substantial shortfalls in the actual level of patient engagement in terms of patient-provider communication, shared-decision making, and follow-up and support between visits [7, 48].
The self-management support approaches reviewed here differ primarily in terms of mode, format, and materials. Across and within countries, patients are offered a wide variety of educational resources and services, ranging from written materials only to different combinations of individual and/or group-based education sessions, interactive websites, telephone services, and/or peer support. According to a systematic review by Barlow et al. (2002), diversity in self-management interventions is advisable because ‘no approach will meet the needs of all participants at all points in time’ . With regard to content, support efforts in the 13 countries tend to focus primarily on the first two sets of activities distinguished in the Corbin and Strauss framework , namely medical and behavioral management, but less so on helping patients deal with the emotional consequences of chronic illness. Active involvement of patient associations in chronic care provision, which is the case in some countries, might be an important step towards better support for patients’ emotional management. The six-month evaluation of the Expert Patient Programme in England showed that lay-led education efforts can result in improvements in patients’ partnerships with doctors, their self-efficacy, self-reported energy levels, health-related quality of life, and psychological wellbeing . In Austria, the added benefit of peer-support in the Therapy Aktiv programme is currently being evaluated .
The interviews with health care professionals in the Netherlands suggested that, despite the emphasis on the role of patients in recent chronic care policymaking, the actual degree of self-management support in practice remains limited, an observation also reported for other countries [7, 8, 48]. Care providers seem to recognize that engaging patients as partners in their care is key to achieving better health outcomes, yet experience difficulties in operationalizing this phenomenon in their daily working routines. Based on the barriers to patient participation perceived by our respondents, improvements seem necessary in existing IT arrangements and financial incentives to support the use of individual treatment plans. Moreover, it will be important to create a tighter connection between the field of health promotion and the health care system, for instance by including smoking cessation interventions as part of disease management programmes . Broad implementation of self-management support and of a collaborative approach to chronic care more broadly will require a paradigm shift among health care professionals, who have traditionally been trained to take control of and responsibility for patients’ acute health problems . Studies in the area of shared decision-making suggest that adoption of the so-called ‘empowerment paradigm’ – which acknowledges that chronically ill patients provide most of their care themselves – will require time and effort, and a supportive health system context in terms of medical education, care processes, quality measurement, and provider reimbursement . There is a need for further research into barriers and facilitators to implementation to strengthen the dissemination and, with that, the impact of effective self-management support approaches for chronically ill patients within the financial and time-related constraints of daily health care practice.
An important strength of this study is the relatively large number of countries reviewed, which allowed us to provide a broad overview of approaches to self-management support in Europe. Adding an in-depth analysis of support activities in the Netherlands provided more insight into the actual implementation in practice. A limitation of our study is that, despite the use of a data template and the operationalisation of self-management support, country-specific descriptions of support approaches differed in their level of detail and thus some approaches might be relatively underrepresented in this paper. The most important weakness of the research, however, is that we were unable to include the patient perspective, as it was not possible to survey a sufficiently large sample of patients in each country within the time frame of our study. It is likely that patients’ perceptions of the (degree of) self-management support they receive will differ from that of researchers, policymakers/advisors, and health professionals. Existing work has highlighted how, from a patient’s perspective, support for self-management for those with chronic disease in Europe and elsewhere remains underdeveloped, with a 2011 survey of people with chronic conditions in 11 countries finding 20 to 60 percent to report that health care professionals do not help them make treatment plans they can carry out in daily life . Moreover, 25 to 50 percent felt that their doctor did not spend sufficient time with them or explained things in a way that patients would find easy to understand. Combined with our own findings, these findings further stress the importance of future research in the area of self-management support.