Improving patient and carer centred outcomes in longer-term stroke care.

AIMS AND OBJECTIVESThrough a programme of interlinked studies we aim to develop and evaluate interventions to improve the long term outcomes for stroke patients and their carers. We will achieve this through the production of evidenced-based treatment algorithms focused on problems identified by patient and carers; robust evaluation of a new system of care; development of a monitoring measure for long term stroke needs and by qualitative exploration of barriers which impede stroke recovery. BACKGROUNDStroke is a family illness associated with considerable personal, financial and societal burdens. Community-based observational studies over three decades have left little doubt about the daily struggle for people with stroke and their families as they come to terms and deal with the long term consequences of stroke. Despite recognition of the importance of this aspect of stroke care, services addressing the longer term needs remain poorly developed nationally. Our research programme seeks to investigate the provision and effectiveness of post-stroke community care and explore reasons for perceived poor post-stroke recovery. Through systematic reviews and qualitative interviews, we have previously identified the key long term problems identified by people with stroke and their families. From this we have developed and feasibility tested a complex intervention, a patient- and carer-centred system to address longer-term stroke care needs. This is based upon a structured assessment which is linked to 16 up-to-date evidenced-based treatment algorithms (for example addressing post-stroke pain, falls) to inform patient and carer agreed action plans. The whole system of care in contained in a manual and supported by specific training.RESEARCH PLAN 1. We propose to update the treatment algorithms using a structured protocol for searching and assessing the available literature. 2. Working with members of our established ‘stroke care-co-ordinators’ network, we will undertake a 40 centre, cluster randomised controlled, to investigate the impact of the novel system of longer-term stroke care on patients and carer psychological and physical outcomes, and cost-effectiveness. 3. We will undertake psychometric testing for a measure developed to assess and monitor patient and carer post-stroke needs. 4. We will seek to identify factors contributing to patient’s poor adjustment after stroke through a case-control study nested in the randomised trial. This will include qualitative exploration.RESEARCH TEAMOur research team has a fifteen year track record of engagement in this challenging area of longer-term stroke care. Previous work undertaken includes randomised trial evaluations and Cochrane systematic reviews that have informed the evidence-base in this area and this proposed research programme. RESEARCH ENVIRONMENT Our research team has been based in Bradford Teaching Hospitals NHS Trust (BTHT) for nearly 20 years. Anne Forster is clinical lead and BTHT the host organisation for the Yorkshire Stroke Research Network. Additional expertise in the conduct of large trials is provided by an accredited Clinical Trials and Research Unit and in health economic evaluation by colleagues from the Institute of Psychiatry, London. The Academic Department of Rehabilitation Medicine has been at the forefront of European-wide innovation for its work in developing new outcome scales. We are supported by the National Stroke Nursing Forum and the Stroke Association. OUTPUTS AND IMPACT The longer-term-stroke treatment algorithms formulated around key patient and carer problems will be of use to all health professionals who have contact with this large client group (Year 1). We will provide a robustly evaluated community based system of care for stroke and a generalisable template for an effective stroke care co-ordinator role (Year 5). The development of a robust, valid and reliable clinical monitoring measure will enable health professionals to evaluate the ef