Claire Gately

The effectiveness and cost effectiveness of a national lay-led self care support programme for patients with long-term conditions: a pragmatic randomised controlled trial.

Objective: Supporting patients’ self care could have a major effect on the management of long-term conditions, which has led to worldwide interest in effective self care interventions. In England, self care support is being developed through the “Expert Patients Programme”, which provides lay-led generic courses to improve patients’ self care skills. However, the clinical and cost effectiveness of such courses remains unclear. Methods: Two-arm pragmatic randomised controlled trial design with waiting list control in community settings in England. 629 patients with a wide range of self-defined long-term conditions were studied. The lay-led self care support group involved 6-weekly sessions to teach self care skills. Primary outcomes were self-efficacy, reported energy and routine health services utilisation at 6 months. A cost-effectiveness analysis was also conducted. Results: Patients receiving immediate course access reported considerably greater self-efficacy and energy at 6-month follow-up, but reported no statistically significant reductions in routine health services utilisation over the same time period. The cost-effectiveness analysis showed that patients receiving immediate course access reported considerably greater health related quality of life, and a small reduction in costs. If a quality adjusted life year was valued at £20 000 (

Integrating telecare for chronic disease management in the community: What needs to be done?

39 191; €30 282), there was a 70% probability that the intervention was cost effective. Conclusions: Lay-led self care support groups are effective in improving self-efficacy and energy levels among patients with long-term conditions, and are likely to be cost effective over 6 months at conventional values of a decision-maker’s willingness to pay. They may be a useful addition to current services in the management of long-term conditions.

Cost effectiveness of the Expert Patients Programme (EPP) for patients with chronic conditions

BackgroundTelecare could greatly facilitate chronic disease management in the community, but despite government promotion and positive demonstrations its implementation has been limited. This study aimed to identify factors inhibiting the implementation and integration of telecare systems for chronic disease management in the community.MethodsLarge scale comparative study employing qualitative data collection techniques: semi-structured interviews with key informants, task-groups, and workshops; framework analysis of qualitative data informed by Normalization Process Theory. Drawn from telecare services in community and domestic settings in England and Scotland, 221 participants were included, consisting of health professionals and managers; patients and carers; social care professionals and managers; and service suppliers and manufacturers.ResultsKey barriers to telecare integration were uncertainties about coherent and sustainable service and business models; lack of coordination across social and primary care boundaries, lack of financial or other incentives to include telecare within primary care services; a lack of a sense of continuity with previous service provision and self-care work undertaken by patients; and general uncertainty about the adequacy of telecare systems. These problems led to poor integration of policy and practice.ConclusionTelecare services may offer a cost effective and safe form of care for some people living with chronic illness. Slow and uneven implementation and integration do not stem from problems of adoption. They result from incomplete understanding of the role of telecare systems and subsequent adaption and embeddedness to context, and uncertainties about the best way to develop, coordinate, and sustain services that assist with chronic disease management. Interventions are therefore needed that (i) reduce uncertainty about the ownership of implementation processes and that lock together health and social care agencies; and (ii) ensure user centred rather than biomedical/service-centred models of care.

Predicting who will benefit from an Expert Patients Programme self-management course

Objective: To assess the cost effectiveness of the Expert Patients Programme (EPP) intervention compared to a treatment as usual alternative. Design: Two-arm pragmatic randomised controlled trial design with waiting list control. Setting: Community settings in England. Patients: Patients with a wide range of self-defined long-term conditions. Intervention: The EPP based on the US chronic disease self management program (CDSMP), a lay-led self-care group involving six weekly sessions to teach self-care support skills. Main outcome measures: Costs estimated over a 6-month period from a societal perspective. Health outcomes estimated in terms of quality adjusted life years (QALYs) generated by patients’ response to the EQ5D at baseline and 6-month follow-up. Results: The intervention group is associated with better patient outcomes, at slightly lower cost. Specifically, the intervention group has a 0.020 QALY gain compared with the control group, and a reduced cost of around £27 per patient. The intervention would therefore be considered dominant. While the QALYs gained are small in absolute terms, an additional 0.02 QALY is equivalent to an extra one week of perfect health per year. When the value of a QALY is £20 000 the EPP has a probability of 94% of being cost effective. Indeed, for all plausible values of willingness-to-pay for a QALY the EPP group is more likely to be cost effective than the control group. Conclusions: The EPP intervention evaluated in this trial is very likely to provide a cost effective alternative to usual care in people with long-term conditions.

Are some more equal than others? Social comparison in self-management skills training for long-term conditions

BACKGROUND In England, the Expert Patients Programme, a lay-led chronic disease self-management course, was developed to improve self-care support and skills. The course is designed for anyone with a self-defined long-term condition, and attracts a heterogeneous group of patients. A randomised controlled trial has demonstrated effectiveness in improving subjective health. However, it is not known whether particular patient characteristics predict the impact of the course. AIM To determine whether baseline characteristics predict clinical outcomes from attendance at a chronic disease self-management course; and to assess whether identification of such characteristics assists in targeting the course to individuals most likely to benefit. DESIGN OF STUDY A post-hoc subgroup analysis of data from a randomised controlled trial to explore predictors of three trial outcomes: self-efficacy, energy, and health-related quality of life. SETTING Participants with self-defined long-term conditions (n = 629) were recruited from community settings in all 28 strategic health authorities in England. METHOD Multiple regression was used to examine interactions between baseline variables and trial outcomes. RESULTS The predictors demonstrating significant interactions were: age and general health, and baseline values for self-efficacy, energy levels, and health-related quality of life. CONCLUSION Participants with lower self-efficacy and health-related quality of life at baseline demonstrated more positive health outcomes. The Expert Patients Programme may have a protective effect on health-related quality of life for patients with poor health and low confidence. Younger people benefited substantially more than older people. Results suggest that positive outcomes associated with the course will be demonstrated with a wide variety of patients, although it may be worthwhile encouraging attendance of younger patients, those lacking confidence, and those coping poorly with their condition.

Urban regeneration and mental health

Background: Social comparisons influence self-evaluation and social and psychological adjustment to illness but are under-explored in relation to self-skills training group situations. Methods: A longitudinal qualitative study embedded within an RCT of a national programme of lay led self-care support in England (Department of Health, 2001). In-depth interviews were undertaken with a purposeful maximum variation sample of recruits. Data were analysed thematically. Three key themes emerged highlighting (1) the experience of group participation and interaction, (2) the process and (3) function of social comparison. Results: Data highlight the salience of social comparison as an underlying feature of the group dynamics of self-care skills training. The nature, dimensions and scope of social comparisons extend beyond the cognitive states and dimensions traditionally forming the focus of social—psychological approaches to social comparison to include wider dimensions including entitlement to resources. The results confirm the tendency to make positive comparisons that result in beneficial self-evaluations. However, positive comparisons allow respondents to present themselves as socially and morally worthy, which may act to mask the identification of appropriate need and inequalities. Conclusion: Social comparisons function both as an accurate representation of internal cognitive states but also constitutes identity work involving competing values and moral requirements. We show that even those who report significant needs will sometimes portray themselves in a way that suggests positive social comparisons, which fit with a rationed and morally prescriptive and acceptable view of entitlement to NHS services. Such insights suggest that social comparisons in initiatives such as the EPP may be beneficial for some but exacerbate rather than alleviate health inequalities in long-term condition management for others.

What Outcomes Are Important to Patients with Long Term Conditions? A Discrete Choice Experiment

Abstract.Objective:The aim of this study was to assess the impact of an urban regeneration project on mental health.Method:A longitudinal study was made with 22-month follow-up in a Single Regeneration Budget area, and matched control area in South Manchester. A total of 1344 subjects responded to a postal questionnaire survey. The main outcome measures were GHQ12 (mental health) status, MANSA (Life satisfaction), and GP use.Results:Mental health outcome in the index and control areas showed no improvement over time. Health satisfaction declined slightly in the index compared to the control area. GP use was unchanged. Restricted opportunities, a variable closely related to mental health, were not removed by the urban regeneration initiative.Conclusions:The urban regeneration initiative may have had little impact because it failed to address the concerns of local residents and failed to remove restricted opportunities, which appeared to be the key factor. A longer follow-up period may be required to demonstrate an effect.

More than jobs and houses: mental health, quality of life and the perceptions of locality in an area undergoing urban regeneration

OBJECTIVE To assess how much patients with long-term conditions value self-efficacy (i.e., confidence in their ability to manage their condition) compared with other health outcomes, including measures of quality of life, and process outcomes including access to General Practitioners. METHODS Discrete Choice Experiment (DCE) set in UK community settings. PARTICIPANTS 367 patients (mean age 57.5) living in the community with a wide range of self-defined long-term conditions. MAIN OUTCOME MEASURES The relative value that individuals place on four specific outcomes, namely, self-efficacy, Health Related Quality of Life (HRQoL), access to General Practitioners, and level of isolation. RESULTS Most responders completed their questionnaire in a consistent manner. Most valuations of outcomes were in the expected direction and were statistically significant. A substantial minority of responders exhibited counter-intuitive preferences. The existence of a significant constant in all models raised concerns about model misspecification. Nevertheless, all models showed that participants were willing to trade substantial reductions in their HRQoL for improvements in their self-efficacy. CONCLUSIONS The majority of patients with chronic conditions were able to complete the DCE questionnaires. However, the existence of counter-intuitive preferences and evidence of model misspecification require further investigation. These issues are largely overlooked in the health economics literature. Self-efficacy is an important outcome for this group and is not included explicitly in conventional HRQoL measures. This is potentially important where decisions are made on the basis of cost-effectiveness using Quality Adjusted Life Years as the metric. Exclusion of these outcomes may lead to the cost-effectiveness of these interventions being understated.

State-event relations among indicators of susceptibility to mental distress in Wythenshawe in the UK

BackgroundUrban regeneration initiatives are considered to be one means of making a contribution to improving people’s quality of life and mental health. This paper considers the relationship between lay perceptions of locality adversity, mental health and social capital in an area undergoing urban regeneration.MethodsUsing qualitative methods as part of a larger multi-method study, perceptions of material, and non-material aspects of the locality and the way in which people vulnerable to mental health problems coped with living in adversity were identified as being more highly valued than intended or actual changes to structural elements such as the provision of housing or employment.ResultsThemes derived from narrative accounts included concerns about the absence of social control in the locality, the reputation of the area, a lack of faith in local agencies to make changes considered important to local residents, a reliance on personal coping strategies to manage adversity and perceived threats to mental health which reinforced a sense of social isolation. We suggest these elements are implicated in restricting opportunities and enhancing feelings of ‘entrapment’ contributing to low levels of local collective efficacy. The gap between social capital capacity at an individual level and links with collective community resources may in part have accounted for the absence of improvements in mental health during the early life of the urban regeneration initiative.Implications/conclusionsIn order to enhance quality of life or mental health, agencies involved in urban initiatives need as a basic minimum to promote security, increase leisure opportunities, and improve the image of the locality.

Evaluating the impact of a locality based social policy intervention on mental health: conceptual and methodological issues.

This paper explores the utility of concepts drawn from psychosocial theory as predictors of the proneness to mental distress among the residential population of a large suburban council estate (Wythenshawe, South Manchester). In this respect, items are selected and tested to form composite variables measuring individual ratings with regard to notions of structural risk, personal vulnerability, goal-setting behaviour, quality of life, and the frequency of life events and restricted opportunities. Mental distress is enumerated on the standard GHQ12-point scale. The design makes the distinction between composite variables that record persistent states and those which count events and aspirations immediate to the individuals present experience. To examine the consequences of this difference between indicators of prevalence and incidence, our analysis adopts a two-stage multiple regression format. The first examines these state-event interactions among the composite variables, while the second tests the separate significance of these types as predictors of GHQ12. The findings reveal significant proportions of the variation in GHQ12 are be explained either by associations with the ageing process or by those linked to subjective indicators of the quality of life. In contrast, structural deprivation correlates less significantly with the reporting of psychiatric distress in this socially homogeneous population. The discussion considers the methodological implications of these relationships for understanding common mental health problems together with their connotations for health policy.