Title: Developing primary care services for stroke survivors
Funder: Department of Health and Social Care

Abstract: Aims and Objectives 1. Develop a primary care based model to optimise post-discharge care; 2. Develop a &ldquo;Managing life after stroke&rdquo; 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 &ldquo;Managing life after stroke&rdquo; 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 &ldquo;Managing Life After Stroke&rdquo; 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 &ldquo;Managing Life After Stroke&rdquo; 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 &pound;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 be convened for each of the three strands of the programme. Development of the primary care model and the evaluations will be led from Cambridge (with management group input from Leicester). The &ldquo;Managing Life After Stroke&rdquo; programme will be led from Leicester, but the Cambridge team will be actively involved both via the relevant management group, and in active involvement with the development phases. The key ethical issue is that we intend the programmes and the evaluations to be as inclusive of the whole primary care stroke population as possible. Patient & Public Involvement A stroke survivor has been actively involved as an applicant since the outset of this work, which has further benefited from feedback from two public workshops involving stroke survivors and their carers and lay representatives from the local INsPIRE group. Stroke survivors will be members of all the project management groups.

Lay abstract: Stroke survivors tell us of long term problems. This research programme aims to address two of the key issues that stroke survivors identify: a feeling of abandonment after discharge; and a lack of information and knowledge about many aspects of stroke and stroke care. In theory, primary care takes over responsibility for the health care needs of stroke survivors after discharge, but in practice, many people fall through the net, with primary care failing to identify many continuing health care problems, and specialist services not formally handing over responsibility. We will develop a new way for primary care services to work to enable them to meet the needs of stroke survivors after they have been discharged from specialist rehabilitation. We consult stroke survivors, carers and health care professionals using a variety of research methods. The new way is likely to include: better communication between primary care and specialist services; structured review of patient needs; re-referral to specialist care where indicated; information on how to access local services; a single point of contact for health services for stroke survivors and carers; a training programme for primary care practitioners on how to deliver the new approach. We will test whether this new approach meets patient needs through a trial in which we will compare how patients fare in practices that have and have not been trained to use the new approach. We will develop a Managing Life After Stroke programme for stroke survivors and their carers. Firstly, we will develop a curriculum through a multi-disciplinary group including patients and carers. This group will identify potential topics for the programme, prioritise these topics, and agree content and how it should be delivered. We will support this group by providing it with evidence from published studies, and from studies we will carry out ourselves. We will then try out the programme on a small number of stroke patients and carers, adapt it in the light of their feedback, and try it out again. When we are happy with it, we will test out the programme in the East of England and in Leicester. We will carry out a trial to see what difference it makes to people who receive the programme as compared to people who don t. The new primary care approach if it works will lead to better long term meeting of patient needs, better co-ordination with specialist services, and easier mechanisms for stroke survivors to re-access specialist services if required. The Managing Life After Stroke programme if it works will enable stroke survivors and their carers to be better informed about stroke, how to cope with its effects, and how best to reduce risk of further stroke.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: STROKE