Completed Public Health & Healthcare Psychology & Behaviour

Developing primary care services for stroke survivors

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Stroke survivors leaving hospital often find that their GP practice has no structured plan to help them manage life after a stroke. This project will develop and test two linked interventions: a primary care model to coordinate post-discharge care, and a group-based "Managing life after stroke" programme that teaches self-management skills, modelled on the nationally rolled-out DESMOND programme for diabetes. The problem is that long-term needs of stroke survivors and their carers are largely ignored by the NHS. Most research has focused on specialist stroke services, not on the general practices where patients will attend for years. There is almost no evidence on how primary care can help beyond prescribing preventive drugs. If the interventions prove effective and cost-effective, the team will work with Academic Health Science Networks to roll them out across the NHS. This could transform post-stroke care from a fragmented, reactive system into a proactive, primary-care-led model that gives patients practical tools to manage their own recovery. The development work alone will produce outputs—such as care pathways and educational materials—that can be adopted regardless of trial results.

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Aims and Objectives 1. Develop a primary care based model to optimise post-discharge care; 2. Develop a "Managing life after stroke" programme (including self-management) for people with stroke; 3. Evaluate effectiveness and cost effectiveness of these interventions Background and rationale Longer term needs of stroke survivors and their carers are not being adequately addressed. Research and development initiatives have largely focussed on improving access to specialist services rather than considering the role that primary care might play. In the long term, general practice is where stroke survivors will attend with health problems, but (with the exception of secondary prevention) there is only a limited evidence base as to how general practice might benefit these patients. The majority of stroke survivors report having information needs. The evidence suggests that active approaches to information provision, such as the proposed "Managing life after stroke" programme are more effective than passive approaches. Research environment The research is collaboration between teams in Cambridge and Leicester, with additional expertise drawn from KCL, Birmingham and Nottingham. Research Plan 1. Development of primary care model. We will review the literature, carry out interviews and focus groups with stroke survivors and carers and health care professionals and use formal consensus methods. A multi-disciplinary group will agree the components of the primary care model in the light of our research findings, which we will then pilot in a single practice. 2. Development of "Managing Life After Stroke" programme. We will apply the principles and approach with which the effective and nationally rolled out DESMOND programme for type 2 diabetes was produced to develop this programme. This involves identifying the topics (through literature review), prioritising them, then developing and testing the programme through a series of iterative loops before piloting the programme. 3. Evaluation: We will perform a cluster randomised controlled trial and cost impact study of the primary care model in a single geographical area (East of England). We will perform an individually randomised controlled trial and cost effectiveness study of the "Managing Life After Stroke" programme. Projected outputs & dissemination plans. In addition to the evaluation of two interventions, the development work for each will produce important additional outputs that can be translated into the NHS regardless of the results of our trials. We will work with the Eastern and East Midlands Academic Health Science Networks (AHSNs) to adopt and diffuse effective practice arising from the programme. Relevant expertise & experience of the research team The lead applicant has significant experience of running primary care based stroke research, including trials. The co-applicants and collaborators provide key experience in: developing complex interventions, including educational and self-management programmes; qualitative research; health services research, including consensus techniques; behavioural science; psychology; statistics; health economics; evidence dissemination; clinical trials; and personal experience of stroke. There is also content expertise in terms of general practice; stroke rehabilitation; stroke medicine and nursing. Justification of costs To develop and evaluate two complex interventions within a single five year £2M programme grant is ambitious. There are important synergies between the research strands which make this feasible. The costs reflect the need for a multi-disciplinary team with different methodological and content expertise, and for research staff to prosecute the mixed methods that are employed in the programme. Management & Governance, including programme management and any ethical implications The programme will be overseen by a steering group with an independent chair. Management groups will

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Related Research

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Improving patient and carer centred outcomes in longer-term stroke care.
Identifying the long-term needs of stroke survivors and developing an innovative model of care

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