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

BACKGROUND: Telecare 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. METHODS: Large 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. RESULTS: Key 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. CONCLUSION: Telecare 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.

What outcomes are important to patients with long term conditions? A discrete choice experiment.

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.

Creating 'good' self-managers?: facilitating and governing an online self care skills training course.

BACKGROUND: In chronic disease management, patients are increasingly called upon to undertake a new role as lay tutors within self-management training programmes. The internet constitutes an increasingly significant healthcare setting and a key arena for self-management support and communication. This study evaluates how a new quasi-professional health workforce - volunteer tutors - engage, guide and attempt to manage people with long-term conditions in the ways of 'good' self-management within the context of an online self-management course. METHODS: A qualitative analysis of postings to the discussion centre of 11 online classes (purposively selected from 27) run as part of the Expert Patients Programme. Facilitators (term for tutors online) and participants posted questions, comments and solutions related to self-management of long-term conditions; these were subjected to a textual and discursive analysis to explore: a) how facilitators, through the internet, engaged participants in issues related to self-management; b) how participants responded to and interacted with facilitators. RESULTS: Emergent themes included: techniques and mechanisms used to engage people with self-management; the process facilitators followed - 'sharing', 'modelling' and 'confirming'; and the emergence of a policing role regarding online disclosure. Whilst exchanging medical advice was discouraged, facilitators often professed to understand and give advice on psychological aspects of behaviour. CONCLUSION: The study gave an insight into the roles tutors adopt - one being their ability to 'police' subjective management of long-term conditions and another being to attempt to enhance the psychological capabilities of participants.

Planning for end of life care within lay-led chronic illness self-management training: the significance of 'death awareness' and biographical context in participant accounts.

UK health policy dictates that Advance Care Planning (ACP), including the use of living wills, promotes choice and quality regarding end of life care for those with chronic and life-threatening conditions and it has been incorporated in self-management training. This paper reports a qualitative evaluation based on in-depth interviews with 31 respondents who had completed a UK-based lay-led self-management course (The Expert Patients Programme), and 12 respondents who had completed the same course adapted for people who are HIV positive. We draw upon previous social research on 'death awareness' and the biographical context of illness experience and management in examining the impact of incorporating this subject within a self-management intervention. The analysis demonstrates that many participants were unprepared to face issues raised in the session with material represented as disrupting some aspects of illness adaptation and existing views about death and dying. Positioning educational material on death and dying alongside that on 'positive' self-management of illness highlights the complexities and sensitivities of planning for end of life care with implications for future educational interventions of this type.

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

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.

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 pounds (39,191 dollars; 30,282 Euro), 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.

Re-thinking the relationship between long-term condition self-management education and the utilisation of health services.

Encouraging self-management has been viewed as one means of reducing health service utilisation and contributing to improved demand management. However, the processes and imputed relationship between self-management education skills and health service contact are poorly understood. This paper reports on data from an embedded qualitative study which ran alongside a randomised controlled trial in England designed to test the clinical and cost effectiveness of a self-care support policy which found no statistically significant reductions in health service utilisation. Drawing on concepts from the sociology of chronic illness, analyses suggest that the biographical and social context relevant to individuals' experience of living with a long-term condition, history of health service utilisation, and relationships with health professionals are relevant to understanding the impact of self-management education and related policies aimed at bringing about changes in service use. Our study suggests that future health policy assumptions about utilisation in the context of chronic disease management and self-care support polices may benefit by acknowledging the complex, contextual and recursive nature of health service utilisation operating in the life worlds of patients' experience of living with a long-term condition.

Recruitment to a trial of self-care skills training in long-term health conditions: analysis of the impact of patient attitudes and preferences.

The rise of evidence-based practice has highlighted the importance of effective recruitment to randomised controlled trials if studies are to be adequately powered and valid. However, there are also increasing concerns about patient preferences and choice within trials. The current authors are involved in a trial of a programme to provide self-care skills training for people with long-term health conditions (the 'Expert Patients Programme'), and during the design stage there were significant concerns about the impact of patient preferences on the feasibility and validity of the study, because recruitment required that patients risk randomisation to a waiting list control group. This paper first details the issues raised in this trial, and the methods used to attempt to overcome them. Data on recruitment rates, loss to follow up and patient decision making about participation are presented, which suggested that initial assumptions about the impact of patient preferences were incorrect. Key lessons concerning preferences in this patient population and related issues in trial administration are then discussed.

A qualitative study of GPs' attitudes to self-management of chronic disease.

BACKGROUND: Improving the quality of care for patients living with a chronic illness is a key policy goal. Alongside systems to ensure care is delivered according to evidence-based guidelines, an essential component of these new models of care is the facilitation of self-management. However, changes to the way professionals deliver care is complex, and it is important to understand the key drivers and barriers that may operate in the primary care setting. AIM: To explore GPs' perspectives on their involvement in the facilitation of chronic disease self-management. DESIGN OF STUDY: Qualitative study. SETTING: General practices located in two primary care trusts in northern England. METHOD: Data were collected through in-depth, semi-structured interviews with a purposive sample of GPs. During analysis, categories of response were organised into themes that relate to Howie's theoretical model for understanding general practice consultations: content, values, context. RESULTS: The GPs' responses highlighted tensions and trade-offs regarding their role in facilitating self-management. Although GPs valued increased patient involvement in their health care, this was in conflict with other values concerning professional responsibility. Furthermore, contextual factors also limited the degree to which they could assist in encouraging self-management. CONCLUSIONS: Providing GPs with training in consultation skills is required in order to encourage the delivery of effective self-management. In addition, the context in which GPs work also needs to be modified for this to be achieved.

Housing improvement and self-reported mental distress among council estate residents.

This paper is concerned with how housing improvements instigated either publicly or privately influence the degree of psychological stress reported by council estate residents in South Manchester. Stress is measured on the GHQ12 scale containing standard symptomatic items. Potential sources of variation in this indicator are analysed within a geographical setting where repeated samples of residents were drawn from two adjacent suburban council housing estates before and after the implementation of a single regeneration budget (SRB) housing initiative in late 1999. The residents of one of these estates (Wythenshawe) were targeted by this funding while those in the other (Mersey Bank) were not. The latter, therefore, serve as a control for the effects of the enhanced incidence of housing improvement activity promoted by this SRB. Regression analyses revealed that stress was raised significantly among the SRB residents perhaps on account of the additional environmental nuisance they encountered. The experience of stress among all residents, however, was dominated by measures of personal psychosocial risk and it is argued that future regeneration initiatives should address the manifestation of these risks in the effort to achieve better mental health.

From patients to providers: prospects for self-care skills trainers in the National Health Service.

Changes in the National Health Service (NHS) workforce and user involvement have been key areas of contemporary health care policy. Potentially, the current separation of the agendas for patient participation and reconfiguration of the workforce are being brought closer together in the NHS through the Expert Patients Programme (EPP), and its potential to create a new community health 'workforce' of self-management and self-care skills trainers and tutors. The aim of the present paper is to assess the establishment and prospects of these trainers as a new workforce role in the EPP and the NHS. This is done through policy analysis and process evaluation recording the development and implementation of the EPP in the NHS. Telephone interviews with individual trainers were undertaken in order to identify the way in which they are being introduced into the NHS. A representative sample of 19 trainers from the 26 teams covering all the primary care trusts (PCTs) in England were interviewed. The EPP trainers are employed and appointed by the Department of Health and assist PCTs to run EPP courses. The analysis of trainer perspectives illuminated some of the tensions inherent in this new role, which emerge from the consequences of having a long-term condition, their relationship to other occupations operating within primary care and their structural position within the NHS. Prospects for the future development of self-management trainers remain uncertain. Two likely outcomes are examined. The first is that trainers and volunteer tutors will become increasingly integrated as a semi-professionalised group within the primary care workforce. The other option is for trainers to become freelance consultants commissioned by PCTs to run local self-management, self-care support or EPP programmes with the consequence of establishing a more distant relationship with mainstream NHS provision.

Staff shortages in the mental health workforce: the case of the disappearing approved social worker.

Approved social worker (ASW) numbers in England and Wales were compared on the basis of two national surveys conducted in 1992 and 2002. These data were supplemented by reports published by the Employers' Organisation in the intervening years. Although raw numbers suggested a modest absolute increase over this time, rates of ASW's per 100,000 population declined by over 50%. Possible explanations for this dramatic fall are explored. The authors conclude that specific and targeted action needs to be taken by the government and public sector employers to determine the numbers of mental health social workers needed in modernised community mental health services.

The impact of 'statutory duties' on mental health social workers in the UK.

In the UK, applications for involuntary admission to psychiatric units are made mainly by specially trained approved social workers (ASWs). Proposed changes in the legislation will permit other professionals to undertake these statutory duties. This study aimed to examine how ASW status impacts upon work pattern and workload stresses by comparing ASWs with other mental health social workers who did not carry statutory responsibilities. A multimethod design was adopted that included a cross-sectional national survey of mental health social workers (n=237, including 162 ASWs), and a telephone survey of mental health service managers (n=60). Data were collected using a semistructured questionnaire and diary, the content of which was derived from focus-group work and standard measures. Features of job content, working patterns and conditions were described and their association with stress, burnout and job satisfaction examined. ASWs were older and had been qualified longer than non-ASWs. The working patterns and conditions of the two groups did not differ, although ASWs did more hours on duty. ASWs received less support at work, particularly from supervisors and their role afforded less decision latitude than that of non-ASWs. ASW status was related to an elevated GHQ score, particularly among males. Emotional exhaustion was very high (over two-thirds in both groups) but ASWs and non-ASWs did not differ in this or any other feature of burnout, only 8% of the sample were actually 'burnt-out', being more common among ASWs. ASWs were more dissatisfied and were more likely than non-ASWs to want to leave their job. Given that ASW status increased stress and job dissatisfaction, especially for men, and was related to a desire to leave one's current job, it seems likely that extending statutory duties to other professionals will increase levels of stress, burnout and dissatisfaction in these groups also. In turn, this might have consequences for staff recruitment and retention.

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

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 individual's 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.

Alcohol dependent patients have weak negative rather than strong positive implicit alcohol associations.

RATIONALE: Alcohol dependence is characterised by motivational conflict (or ambivalence) in controlled cognitive processes, but it is unclear if ambivalence also exists within automatic cognitive processes, and if ambivalence operates between controlled and automatic processes. OBJECTIVE: To investigate ambivalence operating within and between controlled and automatic processes in alcohol dependence. METHOD: Alcohol-dependent patients who had recently completed inpatient alcohol detoxification (N = 47) and social drinking controls (N = 40) completed unipolar implicit association tests and self-report measures of alcohol approach and avoidance motivation and alcohol outcome expectancies. RESULTS: As predicted, both positive and negative alcohol outcome expectancies were stronger in alcohol-dependent patients compared to controls, indicative of ambivalence. Groups did not differ on implicit alcohol-positive associations, but alcohol-dependent participants had significantly weaker alcohol-negative associations than controls. Regression analyses revealed that implicit negative associations accounted for unique variance in group membership after controlling for alcohol outcome expectancies. CONCLUSIONS: Our findings demonstrate that alcohol dependent patients possess weak automatic alcohol-negative associations but not strong automatic alcohol-positive associations, and they suggest the presence of conflict between controlled and automatic processes with regard to negative alcohol cognitions.

Established users and the making of telecare work in long term condition management: implications for health policy.

Increasingly policy for long term condition management is focussing on new technologies. Telecare is viewed as a means of making services more responsive, equitable, cost and clinically-effective and able to play a central part in mediating between service users, professionals, and service providers. It has also been identified as helping to establish patient self-management for long term conditions. In this paper we consider the social practices of the work of telecare integration and incorporation for patients, their interactions with professionals and the synergy or otherwise with policy makers' expectations for how patients approach, use and interact with services. The research took place in England and in Wales and involved qualitative interviews with 31 individuals. Our research suggests that, telecare services provide both an adequate substitution for traditional services and additional benefits such as minimising the need to travel and the added reassurance of regular external surveillance. However, the nature of patient work involved is 'low level' rather than requiring higher level interpretation of readings and decision making commensurate with realising a policy vision of more independent and responsible self -managers. Indeed a paradox of the reliance and acceptance of telecare is the creation of new relationships and dependencies rather than the diminution of reliance envisaged by policy. The illumination of practices around telecare provides evidence for policy makers and others to adjust the predictions and presumptions about how telecare might enable and promote more effective long term condition management.

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

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.

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

BACKGROUND: Urban 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. METHODS: Using 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. RESULTS: Themes 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/CONCLUSIONS: In 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.

Integration of devices into long-term condition management: a synthesis of qualitative studies.

BACKGROUND: Understanding peoples' responses to and ability to incorporate technology for managing long-term conditions into their everyday lives is relevant for informing the development and implementation of new technologies as part of future long-term condition management in domestic environments. Future research and theory building can be facilitated by the synthesis of existing qualitative studies. METHODS: A systematic search for qualitative studies of health technologies at home was undertaken on OVID CINAHL, OVID Medline and CSA databases for the period 1996-2006. Studies (n = 12) that met the inclusion criteria were synthesized and their analyses subjected to qualitative meta-synthesis. FINDINGS: Analyses clustered into five themes: (1) managing multiple uncertainties; (2) the reconstruction of identity; (3) the struggle to remain autonomous while allowing dependence; (4) coming to terms with living a technology-assisted life; and (5) the usability of devices. These translated into a line of argument synthesis in which technology takes on the status of a personified ;other' around which a set of personal and relational attributions are subsequently constructed. These allow the extension of existing illness work to incorporate new technologies. CONCLUSIONS: Ambivalence about the value of technologies that are designed to assist with the management of a long-term condition reflects experiences of the disruptive effects of health technologies on personal identities and strategies of managing illness. At the same time, they are highly valued because they provided new opportunities to complete aspects of illness work that were previously impossible.

The United Kingdom Expert Patients Programme: results and implications from a national evaluation.

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.