Nicola Small

Self-management support interventions to reduce health care utilisation without compromising outcomes: a systematic review and meta-analysis.

BackgroundThere is increasing interest in the role of ‘self-management’ interventions to support the management of long-term conditions in health service settings. Self-management may include patient education, support for decision-making, self-monitoring and psychological and social support. Self-management support has potential to improve the efficiency of health services by reducing other forms of utilisation (such as primary care or hospital use), but a shift to self-management may lead to negative outcomes, such as patients who feel more anxious about their health, are less able to cope, or who receive worse quality of care, all of which may impact on their health and quality of life. We sought to determine which models of self-management support are associated with significant reductions in health services utilisation without compromising outcomes among patients with long-term conditions.MethodsWe used systematic review with meta-analysis. We included randomised controlled trials in patients with long-term conditions which included self-management support interventions and reported measures of service utilisation or costs, as well as measures of health outcomes (standardized disease specific quality of life, generic quality of life, or depression/anxiety).We searched multiple databases (CENTRAL, CINAHL, Econlit, EMBASE, HEED, MEDLINE, NHS EED and PsycINFO) and the reference lists of published reviews. We calculated effects sizes for both outcomes and costs, and presented the results in permutation plots, as well as conventional meta-analyses.ResultsWe included 184 studies. Self-management support was associated with small but significant improvements in health outcomes, with the best evidence of effectiveness in patients with diabetic, respiratory, cardiovascular and mental health conditions. Only a minority of self-management support interventions reported reductions in health care utilisation in association with decrements in health. Evidence for reductions in utilisation associated with self-management support was strongest in respiratory and cardiovascular problems. Studies at higher risk of bias were more likely to report benefits.ConclusionsSelf-management support interventions can reduce health service utilization without compromising patient health outcomes, although effects were generally small, and the evidence was strongest in respiratory and cardiovascular disorders. Further work is needed to determine which components of self-management support are most effective.

Patient empowerment in long-term conditions: Development and preliminary testing of a new measure

BackgroundPatient empowerment is viewed by policy makers and health care practitioners as a mechanism to help patients with long-term conditions better manage their health and achieve better outcomes. However, assessing the role of empowerment is dependent on effective measures of empowerment. Although many measures of empowerment exist, no measure has been developed specifically for patients with long-term conditions in the primary care setting. This study presents preliminary data on the development and validation of such a measure.MethodsWe conducted two empirical studies. Study one was an interview study to understand empowerment from the perspective of patients living with long-term conditions. Qualitative analysis identified dimensions of empowerment, and the qualitative data were used to generate items relating to these dimensions. Study two was a cross-sectional postal study involving patients with different types of long-term conditions recruited from general practices. The survey was conducted to test and validate our new measure of empowerment. Factor analysis and regression were performed to test scale structure, internal consistency and construct validity.ResultsSixteen predominately elderly patients with different types of long-term conditions described empowerment in terms of 5 dimensions (identity, knowledge and understanding, personal control, personal decision-making, and enabling other patients). One hundred and ninety seven survey responses were received from mainly older white females, with relatively low levels of formal education, with the majority retired from paid work. Almost half of the sample reported cardiovascular, joint or diabetes long-term conditions. Factor analysis identified a three factor solution (positive attitude and sense of control, knowledge and confidence in decision making and enabling others), although the structure lacked clarity. A total empowerment score across all items showed acceptable levels of internal consistency and relationships with other measures were generally supportive of its construct validity.ConclusionInitial analyses suggest that the new empowerment measure meets basic psychometric criteria. Reasons concerning the failure to confirm the hypothesized factor structure are discussed alongside further developments of the scale.

Changes in Patient Experiences of Primary Care During Health Service Reforms in England Between 2003 and 2007

PURPOSE Major primary care reforms have been introduced in recent years in the United Kingdom, including financial incentives to improve clinical quality and provide more rapid access to care. Little is known about the impact of these changes on patient experience. We examine patient reports of quality of care between 2003 and 2007, including random samples of patients on practice lists and patients with long-term conditions. METHODS We conducted a cross-sectional design study of family practices in which questionnaires were sent to serial samples of patients in 42 representative general practices in England. Questionnaires sent to samples of patients with chronic disease (asthma, angina, and diabetes) and random samples of adult patients (excluding patients who reported any long-term condition) in 2003, 2005, and 2007 addressed issues of access, communication, continuity of care, coordination, nursing care, and overall satisfaction. RESULTS There were no significant changes in quality of care reported by either group of patients between 2003 and 2007 for communication, nursing care, coordination, and overall satisfaction. Some aspects of access improved significantly for patients with chronic disease, but not for the random samples of patients. Patients in both samples reported seeing their usual physician less often and gave lower satisfaction ratings for continuity of care. Most scores were significantly higher for the chronic illness samples than for the random samples of patients in 2003, even after adjusting for age. CONCLUSIONS There was a modest improvement in access to care for patients with chronic illness, but all patients now find it somewhat harder to obtain continuity of care. This outcome may be related to the incentives to provide rapid appointments or to the increased number of specialized clinics in primary care. The possibility of unintended effects needs to be considered when introducing pay for performance schemes.

Systematic techniques for assisting recruitment to trials (START): study protocol for embedded, randomized controlled trials.

BackgroundRandomized controlled trials play a central role in evidence-based practice, but recruitment of participants, and retention of them once in the trial, is challenging. Moreover, there is a dearth of evidence that research teams can use to inform the development of their recruitment and retention strategies. As with other healthcare initiatives, the fairest test of the effectiveness of a recruitment strategy is a trial comparing alternatives, which for recruitment would mean embedding a recruitment trial within an ongoing host trial. Systematic reviews indicate that such studies are rare. Embedded trials are largely delivered in an ad hoc way, with interventions almost always developed in isolation and tested in the context of a single host trial, limiting their ability to contribute to a body of evidence with regard to a single recruitment intervention and to researchers working in different contexts.Methods/DesignThe Systematic Techniques for Assisting Recruitment to Trials (START) program is funded by the United Kingdom Medical Research Council (MRC) Methodology Research Programme to support the routine adoption of embedded trials to test standardized recruitment interventions across ongoing host trials. To achieve this aim, the program involves three interrelated work packages: (1) methodology - to develop guidelines for the design, analysis and reporting of embedded recruitment studies; (2) interventions - to develop effective and useful recruitment interventions; and (3) implementation - to recruit host trials and test interventions through embedded studies.DiscussionSuccessful completion of the START program will provide a model for a platform for the wider trials community to use to evaluate recruitment interventions or, potentially, other types of intervention linked to trial conduct. It will also increase the evidence base for two types of recruitment intervention.Trial registrationThe START protocol covers the methodology for embedded trials. Each embedded trial is registered separately or as a substudy of the host trial.

Telephone based self-management support by 'lay health workers' and 'peer support workers' to prevent and manage vascular diseases: a systematic review and meta-analysis

BackgroundImproved prevention and management of vascular disease is a global priority. Non-health care professionals (such as, ‘lay health workers’ and ‘peer support workers’) are increasingly being used to offer telephone support alongside that offered by conventional services, to reach disadvantaged populations and to provide more efficient delivery of care. However, questions remain over the impact of such interventions, particularly on a wider range of vascular related conditions (such as, chronic kidney disease), and it is unclear how different types of telephone support impact on outcome. This study assessed the evidence on the effectiveness and cost-effectiveness of telephone self-management interventions led by ‘lay health workers’ and ‘peer support workers’ for patients with vascular disease and long-term conditions associated with vascular disease.MethodsSystematic review of randomised controlled trials. Three electronic databases were searched. Two authors independently extracted data according to the Cochrane risk of bias tool. Random effects meta-analysis was used to pool outcome measures.ResultsTen studies were included, primarily based in community settings in the United States; with participants who had diabetes; and used ‘peer support workers’ that shared characteristics with patients. The included studies were generally rated at risk of bias, as many methodological criteria were rated as ‘unclear’ because of a lack of information.Overall, peer telephone support was associated with small but significant improvements in self-management behaviour (SMD = 0.19, 95% CI 0.05 to 0.33, I2 = 20.4%) and significant reductions in HbA1c level (SMD = -0.26, 95% CI −0.41 to −0.11, I2 = 47.6%). There was no significant effect on mental health quality of life (SMD = 0.03, 95% CI −0.12 to 0.18, I2 = 0%). Data on health care utilisation were very limited and no studies reported cost effectiveness analyses.ConclusionsPositive effects were found for telephone self-management interventions via ‘lay workers’ and ‘peer support workers’ for patients on diabetes control and self-management outcomes, but the overall evidence base was limited in scope and quality. Well designed trials assessing non-healthcare professional delivered telephone support for the prevention and management of vascular disease are needed to identify the content of effective components on health outcomes, and to assess cost effectiveness, to determine if such interventions are potentially useful alternatives to professionally delivered care.

Living with complexity; marshalling resources: a systematic review and qualitative meta-synthesis of lived experience of mental and physical multimorbidity.

BackgroundMultimorbidity poses a major health burden worldwide yet most healthcare is still orientated towards the management of single diseases. Literature on the experience of living with multimorbidity is accumulating but has not yet been synthesised in a manner conducive to informing the design of self-management interventions for this population. This study aimed to systematically review and synthesise findings from published, in-depth qualitative studies about the experience of multimorbidity, with a view to identifying the components and motivation for successful self-management in this population.MethodsSystematic review of and meta-synthesis of qualitative studies that evaluated patient experience of living with and/or self-managing mental and/or physical multimorbidity. MEDLINE, Embase, PsycINFO, CINAHL, and ASSIA along with reference lists of existing reviews and content pages of non-indexed specialists comorbidity journals were searched.ResultsNineteen studies from 23 papers were included. A line of argument synthesis was articulated around three third-order constructs: 1) Encounters with complexity; 2) Marshalling medicines, emotions, and resources; and 3) Self-preservation and prevention. Our interpretation revealed how mental and physical multimorbidity is experienced as moments of complexity rather than mere counts of illnesses. Successful self-management of physical symptoms was contingent upon the tactical use of medicines, whilst emotional health was more commonly managed by engaging in behavioural strategies, commonly with a social or spiritual component. Motivations for self-management were underpinned by a sense of moral purpose to take responsibility for their health, but also by a desire to live a purposeful life beyond an immediate context of multimorbidity.ConclusionsUnderstanding how people experience the complexities of mental and physical multimorbidity may be crucial to designing and delivering interventions to support successful self-management in this population. Future self-management interventions should aim to support patients to exert responsibility and autonomy for medical self-management and promote agency and self-determination to lead purposeful lives via improved access to appropriate social and psychological support.

The clinical and cost-effectiveness of the BRinging Information and Guided Help Together (BRIGHT) intervention for the self-management support of people with stage 3 chronic kidney disease in primary care: study protocol for a randomized controlled trial

BackgroundImproving the quality of care for people with vascular disease is a key priority. Chronic kidney disease (CKD) has recently been included as a target condition for general practices to add to registers of chronic conditions as part of the Quality and Outcome Framework. This paper outlines the implementation and evaluation of a self-management intervention involving an information guidebook, tailored access to local resources and telephone support for people with stage 3 chronic kidney disease.Methods/DesignThe study involves a multi-site, longitudinal patient-level randomized controlled trial. The study will evaluate the clinical use and cost-effectiveness of a complex self-management intervention for people with stage 3 chronic kidney disease in terms of self-management capacity, health-related quality of life and blood pressure control compared to care as usual. We describe the methods of the patient-level randomized controlled trial.DiscussionThe management of chronic kidney disease is a developing area of research. The BRinging Information and Guided Help Together (BRIGHT) trial aims to provide evidence that a complementary package of support for people with vascular disease that targets both clinical and social need broadens the opportunities of self-management support by addressing problems related to social disadvantage.Trial registrationTrial registration reference: ISRCTN45433299

Care plans and care planning in the management of long-term conditions in the UK: a controlled prospective cohort study

BACKGROUND In the UK, the use of care planning and written care plans has been proposed to improve the management of long-term conditions, yet there is limited evidence concerning their uptake and benefits. AIM To explore the implementation of care plans and care planning in the UK and associations with the process and outcome of care. DESIGN AND SETTING A controlled prospective cohort study among two groups of patients with long-term conditions who were similar in demographic and clinical characteristics, but who were registered with general practices varying in their implementation of care plans and care planning. METHOD Implementation of care plans and care planning in general practice was assessed using the 2009-2010 GP Patient Survey, and relationships with patient outcomes (self-management and vitality) were examined using multilevel, mixed effects linear regression modelling. RESULTS The study recruited 38 practices and 2439 patients. Practices in the two groups (high and low users of written documents) were similar in structural and population characteristics. Patients in the two groups of practices were similar in demographics and baseline health. Patients did demonstrate significant differences in reported experiences of care planning, although the differences were modest. Very few patients in the cohort reported a written plan that could be confirmed. Analysis of outcomes suggested that most patients show limited change over time in vitality and self-management. Variation in the use of care plans at the practice level was very limited and not related to patient outcomes over time. CONCLUSION The use of written care plans in patients with long-term conditions is uncommon and unlikely to explain a substantive amount of variation in the process and outcome of care. More proactive efforts at implementation may be required to provide a rigorous test of the potential of care plans and care planning.

A multimedia intervention to enhance recruitment to clinical trials in primary care and community settings: process of development and evaluation

Results Nineteen reviews were included. Multimedia interventions offer a platform for learning which can include study-specific information (e.g. study purpose, risks), and generic information (e.g. confidentiality). There was evidence that multimedia interventions improved various outcomes including perceived risk, personal choice and feeling informed. PPI forum members and qualitative experts developed study-specific components involving bespoke themes such as investigator details and benefits of participation, and generic information components including informed consent, randomisation and confidentiality. Existing video clips of patients discussing their experiences of participation were carefully matched to these components.

Understanding experiences of and preferences for service user and carer involvement in physical health care discussions within mental health care planning

BackgroundPeople with severe mental illness suffer more physical comorbidity than the general population, which can require a tailored approach to physical health care discussions within mental health care planning. Although evidence pertaining to service user and carer involvement in mental health care planning is accumulating, current understanding of how physical health is prioritised within this framework is limited. Understanding stakeholder experiences of physical health discussions within mental health care planning, and the key domains that underpin this phenomena is essential to improve quality of care. Our study aimed to explore service user, carer and professional experiences of and preferences for service user and carer involvement in physical health discussions within mental health care planning, and develop a conceptual framework of effective user-led involvement in this aspect of service provision.MethodsSix focus groups and four telephone interviews were carried out with twelve service users, nine carers, three service users with a dual service user and carer role, and ten mental health professionals recruited from one mental health Trust in the United Kingdom. Data was analysed utilising a thematic approach, analysed separately for each stakeholder group, and combined to aid comparisons.ResultsNo service users or carers recalled being explicitly involved in physical health discussions within mental health care planning. Six prerequisites for effective service user and carer involvement in physical care planning were identified. Three themes confirmed general mental health care planning requirements: tailoring a collaborative working relationship, maintaining a trusting relationship with a professional, and having access to and being able to edit a living document. Three themes were novel to feeling involved in physical health care planning discussions: valuing physical health equally with mental health; experiencing coordination of care between physical-mental health professionals, and having a physical health discussion that is personalised.ConclusionsHigh quality physical health care discussions within the care planning process demands action at multiple levels. A conceptual framework is presented which provides an evidence-based foundation for service level improvement. Further work is necessary to develop a new patient reported outcome measure to enable meaningful quantification of health care quality and patient experience.