Development of a primary care-based service for stroke aftercare
Submitted November 1999; funded by the Stroke Association.
Purpose
Recent research has clarified aspects of acute hospital care for stroke patients but important longer-term issues remain and can be addressed adequately only in the primary care setting.1,2 These include continuing rehabilitation to minimise handicap; provision of home adaptations, equipment and access to services; psychological support; and responding to intercurrent events. At present, involvement of the primary care health team in stroke is inconsistent. No systematic approach has been developed for routine monitoring, problem identification and co-ordination of services to assist stroke patients and their families as they continue to recover from their stroke and make life adjustments to its consequences. The lack of engagement of primary care in stroke is in particular contrast to the situation with other chronic diseases such as asthma and diabetes, for which a strategic shift from secondary to primary care has occurred. In this initial developmental project the elements of a primary care-based service for stroke will be systematically defined and tested by pilot implementation with process change measurement.
Background
Stroke as a community care issue
Community-based observational studies over three decades have left little doubt about the daily life struggle for victims and their families as they grapple with the longer-term consequences of their stroke illness.3–7 The practical difficulties include lack of information about their condition,8 poor knowledge of the services and benefits available4,9 and fragmented community services10 that are poorly focused.11 Social activities may be restricted despite apparently good physical recovery.5,12 Falls and consequent morbidity are also common.13 Three inter-related themes can be proposed as important stroke challenges: longer-term perspective; greater emphasis on handicap rather than disability; and addressing psychosocial and adjustment needs.1 Ideally, all require a primary care perspective.
Primary care approach to longer-term stroke management
The role of the primary care health team in the longer-term support of stroke patients and their families has received scant attention amongst the vastness of contemporary stroke literature. Currently, primary care health teams behave reactively, responding to ‘crises’ rather than putting into place a proactive preventative strategy. The challenge is to engage the primary care health team in post-stroke care to assess, support and co-ordinate relevant services to minimise longer-term stroke morbidity. This is a difficult task as primary care is hard pressed. Yet opportunities exist, particularly in respect of practice nurses, nurse practitioners and the extended role of community nurses, within the new structure of the primary care group.
Plan of investigation
Simple and single interventions are rarely effective in rehabilitation.14 We are therefore seeking to develop a complex intervention embedded in a clearly described organisational structure for delivery. The work has been broken down into stages progressed and co-ordinated by a project group comprising the grant applicants, a patient representative from a local stroke club, Dr Robert Ashworth (GP with academic links), and the project research assistant.
Stage 1: preparatory work (9 months)
This will entail producing a report identifying the most frequently encountered post-acute stroke problems and their optimal management based on best available evidence. This will be achieved by (a) literature searching; (b) existing collaboration with the Glasgow-based systematic review of community rehabilitation stroke studies; (c) current work reviewing models of community care (Nuffield Institute for Health); (d) examples of good practice: the Stroke Association has identified six community care stroke projects that demonstrate successful innovative practice and these are under descriptive evaluation by Professor Chamberlain, who has kindly made the interim reports available to us; and (e) interviews with regional Stroke Association staff who have daily contact with stroke patients.
Stage 2: user involvement (4 months)
We will form focus groups of 10–12 patients and carers in at least three localities: Bradford, Sheffield and Leeds. The groups will receive a presentation of the stage 1 findings and suggestions from the project group to date and be invited to make a critical appraisal of these ideas. We wish to examine for areas of agreement and disagreement: to determine the extent to which the conclusions from stage 1 ‘fit’ with their experiences. Facilitation of the groups will be by Nuffield Institute for Health staff, who have considerable experience with this type of sensitive exploratory research. The discussions and dynamics of the focus groups will be recorded by contemporaneous note taking by a research assistant. Some individual interviews with assistance from carers will also be necessary to ensure that people with dysphasia are included. Other individual interviews will be arranged if particular areas of ambiguity emerge that require greater clarification.
Stage 3: consolidation (3 months)
The distillations from the focus groups will be synthesised around three key areas:
the main patient and carer stroke problems to be encompassed
guidance on the optimum responses to those problems
an outline format and content for the proces of co-ordinating the inputs from the primary care team.
Stage 4: involvement of the primary care team (4 months)
This would begin with a series of half-day workshops in four areas [Leeds, Bradford, Sheffield and Skipton, North Yorkshire (rural)] for invited primary care professionals – mixed groups of GPs, nurses, therapists and social service staff. Within each workshop there would be a facilitated debate about what primary care teams currently do for stroke patients and what they would like to do in the light of the ‘good practice’ literature formulated in stage 3. More specifically, we will address two key questions:
Who can take lead responsibility? (e.g., GP, practice nurse, nurse practitioner, community nurse, therapist)
How will this be organised?
Patient perspective: visiting frequency, telephone checks
Primary care perspective: co-ordination of community agencies, a reliable system for case finding, assessing and reviewing needs, nature and range of inputs required.
The workshop conclusions will be summarised and returned to the participants for consultation and refinements.
Stage 5: development of materials and training (4 months)
Implementation of a primary care-based stroke service requires well-presented documentation describing content, process and organisation, and supporting knowledge and skills training. At present, we anticipate a 2-day residential course: 1 day to discuss the nature and consequences of stroke and 1 day to work through the new primary care-based stroke service. Follow-up work will include the participating primary care teams collating lists of local agencies and disability services and developing an initial case load of (say) four patients. These practical experiences will be used for discussion at a second training school session 6 weeks after the first. The training will be organised at the Nuffield Institute for Health, which is well equipped for residential courses and near to the proposed pilot site.
Stage 6: pilot implementation (12 months)
The primary care-based stroke service will be established as a pilot project in north Bradford where provisional access has been obtained. Ethics committee approval for this phase of the study will be requested. The purpose of the pilot is:
to test the feasibility of the primary care stroke service
to determine if the new intervention influences the process of care (not clinical outcomes at this stage)
to prepare for a future evaluation of the primary care-based stroke service by a multisite RCT.
Feasibility study
This will begin with the training of the participating primary health-care teams using the system designed in stage 5. Over 4 months 50 patients will be recruited at various stages of the ‘stroke career’: post discharge to 1-year post stroke onset. Acceptability of the assessment process for patients and families will be determined by regular discussion between research and primary care staff, by non-responses to assessment questions and by interviews with patients. At the end of the feasibility study a workshop will be held for the participating staff to discuss their experiences, identify key issues and problems and suggest refinements. Similarly, we will organise a focus group with participating patients selected on the basis of positive and negative experiences.
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