Re-thinking the relationship between long-term condition self-management education and the utilisation of health services
Introduction
The prevalence of long-term conditions has been identified as a key factor placing increased demand on health services and requiring active management to prevent the costs of health services spiralling out of control. Policies for managing long-term conditions increasingly envisage their care being based around three tiers: case management for patients with multiple, complex conditions; disease management for patients at some risk, through guideline-based programmes in primary care (Department of Health, 2005a; Wagner et al., 2001); and self-care support for low risk patients (70–80% of those with long-term conditions). Self-care has been defined as ‘the care taken by individuals towards their own health and well being: it comprises the actions they take to lead a healthy lifestyle; to meet their social, emotional and psychological needs; to care for their long-term condition; and to prevent further illness or accidents’ (Department of Health, 2005b). One of the aims of top-down policy programmes of self-management support has been to contribute to more effective chronic disease management. Self-management education has also been identified as having a key role to play in utilisation reduction and containing health care spending (Department of Health (1999), Department of Health (2005b)). However, the evidence supporting the impact of self-management and other chronic disease management initiatives on health service utilisation is more equivocal than policy statements often imply (Roland, Dusheiko, Gravelle, & Parker, 2005) and the mechanisms underlying the purported relationship between increases in self-care activities and a reduction in utilisation remain under-explored. In this paper we argue that utilisation needs to be understood more broadly as part of a complex pre-existing relationship that individuals have with health care services. Drawing on a longitudinal qualitative study embedded within an RCT of a national programme of self-care support in England (Department of Health, 2001), the aim of this paper is to illuminate the nature and the processes of utilisation which accompany self-management skills-training by exploring the way in which patients related to services prior and subsequent to participation in a self-care intervention.
The Expert Patients Programme (EPP) is an anglicised version of the Chronic Disease Self-Management Programme (CDSMP) developed in the USA (Lorig et al., 1999) (also being implemented in the US and Australia). One of the primary outcome measures used to judge the effectiveness of these interventions is an impact on utilisation: “Confident, knowledgeable patients practicing self-management will experience improved health status and will utilise fewer health care resources” (Lorig et al., 1999). Some self-management interventions have reported significant impacts on health services utilisation. For example, an RCT of self-management in inflammatory bowel disease (Kennedy et al., 2004) found that following the intervention, patients made significantly fewer hospital visits at one year follow-up (difference −1.04 (95% confidence interval (CI) −1.43 to −0.65); p<0.001). Furthermore, an RCT of self-management in irritable bowel syndrome (Robinson et al., 2006) found that at one year, patients in the intervention group had a 60% reduction in primary care consultations (p<0.001). For others the impact on utilisation has been more equivocal. A trial of the CDSMP (Lorig et al., 1999) carried out in the USA found that compared with a control group, the intervention group reported no significant changes in the physician visits but there were fewer episodes of hospitalisation and nights spent in hospital. However, evidence for utilisation change from other CDSMP trials appears to be the weakest of all outcome improvements (Fu et al., 2003; Lorig, Ritter, & Gonzalez, 2003). Trial outcomes measure changes in the levels of utilisation but tell us little about the purported mechanisms and processes. Trial measures of utilisation are particularly limited because they fail to take into account people's existing relationships and past experiences of health services and the way in which these might feed into current and future patterns of service use. There is also uncertainty about the extent to which self-care acts as an alternative or supplement to, formally provided services and the relationship between health services utilisation, self-care and living with a chronic condition. By contrast, studies of help-seeking and sociological research on the experience of living with a chronic illness point to the complexities of specifying a relationship between illness behaviour and health care utilisation.
Section snippets
The experience of living with a long-term condition and help-seeking
There have been a number of different approaches taken to explain help-seeking behaviour and health service utilisation. These include ‘clinical iceberg’ studies (Hannay, 1979), the cultural model of health care systems (Kleinman, 1978), rational choice and economic models of decision making (Kahneman & Tversky, 1984; Pescosolido, Gardner, & Lubell, 1998); psychological approaches (Barker, Pistrang, Shapiro, & Shaw, 1990) and the social behavioural model (Anderson, 1995). These approaches offer
Composition and delivery of EPP
EPP is a group-based intervention designed for use with any long-term condition, led by trained lay people and delivered in community venues outside of where care is normally provided. The programme is based on self-efficacy theory (Bandura, 1977) and aims to improve self-efficacy and to enable participants to more effectively manage their condition. The course is delivered from a scripted manual and sessions include: relaxation, nutrition, exercise, fatigue and medication. There are no
Study design
A longitudinal qualitative design was used to explore participants’ perceptions of illness, ascertain the nature of self-care and engagement with health care services over time, with participants being interviewed pre- and post-training course. A range of competing philosophies and priorities about chronic illness and its management were explored before and after attending the self-management programme thus minimising bias by retrospective interpretation as well as allowing more time for
Participants
A purposeful maximum variation sampling strategy (Patton, 1990) was deployed to select people from across a range of chronic conditions, ages, genders and illness severity (see Table 1). Participants had filled in a baseline questionnaire and had been randomised to either the intervention or control group of the RCT where recruitment was carried out in all 28 Strategic Health Authorities in England. Only those participants in the intervention group who had indicated their willingness to be
Data collection
Twenty-three pre-course qualitative interviews were conducted from August 2003 to January 2005; post-EPP interviews with this group took place from January 2004 to June 2005. An additional eight interviews were conducted between July 2004 and March 2005 with people who reported moderate to extreme changes in the measures of self-efficacy or self-reported health status on the six month follow-up questionnaire.
Box 1 lists the topic guides used.
All interviews that took place in participants’ homes
Analysis
The authors read and reviewed the transcripts and identified key issues, concepts and themes. Meetings were held regularly throughout the interviewing, collation and analysis stages to discuss deviant cases and reach agreement around emerging themes. Themes that emerged from early interviews were used to inform the areas of investigation in later interviews at each phase (pre- and post-course). Upon completion of data collection, the interviews were analysed thematically across the whole data
Results
The REPORT trial (Research into Expert Patients—Outcomes in a Randomised Trial) was a two-arm trial comparing the clinical and cost effectiveness of EPP with a waiting-list control (Kennedy et al., 2007). Patients in the control group were provided with access to the intervention after a six-month delay. Results showed that patients reported significantly greater self-efficacy and energy but compared to the control group did not report significant reductions in health services utilisation (see
Change and no change in utilisation: reason and context
Two interviewees reported that their level of utilisation had decreased in a manner which broadly fitted the programme's normative values and utilisation outcomes. The participants described feeling more confident about their condition which led to improved self-management, leading to a decrease in health service need.
Em, I have less contact with them now…Obviously I have to go in every now and again for certain prescriptions and things like that…I’m not reliant on the GP to solve the problem …
Trajectories of utilisation in biographical context
The themes presented above suggest that the capacity for any formulaic training package to have an impact on health service utilisation depends to a large degree on the social context and pre-existing relationships people have with services and health professionals. This is further exemplified here by the presentation of two narrative case studies that portray different illness and utilisation trajectories within a biographical context. These representations of health care utilisation and
Discussion
Self-management education programmes are credited with facilitating psychological and social outcomes for those living with a long-term condition (Kendall et al., 2007). One of the key ways of judging the success of self-management programmes has been their ability to impact on health service utilisation. In theory, self-management education is linked to the ability to reduce demand for services through a process of raising the confidence and awareness of individuals to better manage their
Conclusion
The findings of this study suggest that an understanding of the relationship between utilisation and self-management education requires moving beyond viewing outcomes in terms of increases or decreases in utilisation. Rather there is a need to view it as dynamic and part of a broader system mediated by patient's life world experience of chronic illness and trajectories of utilisation. Services and the support provided by health professionals, and the self-care that patients perform for
Acknowledgements
The authors would like to thank Wendy Macdonald, Anne Kennedy and Victoria Lee who have read and commented on previous versions of this paper and the individuals who kindly agreed to be interviewed. The National Primary Care Research and Development Centre (NPCRDC) is a department of the University of Manchester but is funded by the Department of Health. The views expressed in this paper are the views of the authors and not the funding body.
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