Top Ten Priorities for Stroke Services Research A summary of an analysis of Research for the National Stroke Strategy

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1 The Stroke Strategy confirmed that the Department would commission a short analysis of research evidence in relation to the strategy and the top ten research areas identified in it. We said that we would make the report available in the hope that it is useful both to researchers and those who fund research. Top Ten Priorities for Stroke Services Research A summary of an analysis of Research for the National Stroke Strategy Professor Charles Wolfe, Dr Anthony Rudd, Dr Christopher McKevitt Dr Peter Heuschmann, Professor Lalit Kalra.

2 Background The National Stroke Strategy recommendations were developed using current guidelines and systematic reviews and the consensus of expert groups based on clinical experience and good practice. The Strategy is intended to be a pragmatic statement of best practice to guide the further development of high quality stroke services. The Department of Health commissioned a rapid analysis of the research evidence underpinning the recommendations in the National Stroke Strategy. The analysis aimed to identify areas where further research could develop and support the implementation of the strategy. The authors determined their priority areas for research based on the gaps identified in the analysis and selected the 10 areas (detailed below) across the spectrum of the strategy from prevention to long-term care. This document summarises the 10 priority areas identified and offers some guidance as to how gaps in the existing evidence base could be addressed. It is hoped that this brief paper will serve as a useful reference point for researchers and those funding research. This work was funded by the Policy Research Programme at the Department of Health. The views are those of the authors and not necessarily those of the Department of Health. Equality Issues The National Stroke Strategy promotes equal access to services to everyone with a need. All areas of research need to consider the relevance of diversity and equality issues and this is particularly relevant for stroke where inequalities in incidence, access and compliance with appropriate care and survival are influenced by age, ethnicity, gender and socioeconomic status. This may relate to the context and methodology of the research including identification of appropriate data collection systems and the handing and presentation of relevant issues. It is expected that any research undertaken in response to the Strategy will engage different groups and individuals in its design, management and delivery. 1

3 Top Ten Priorities for Stroke Services Research 1. Identification of the key components needed for an effective campaign aimed at reducing the delay in diagnosing and managing stroke. The campaign should then be piloted in different groups of the population. Gaps in the evidence base The focus (timing, content, target audience) of a campaign aimed at reducing the delay in diagnosis and the optimal balance between national and local components need clarification. Although the efficacy of some individual aspects and interventions may have been tested for effectiveness in trials, there is a need to investigate further how a campaign as a whole, can be successfully implemented. Similarly, there is little information about the long-term impact of those aspects (eg awareness, behaviour change) of campaigns that have been tested. There is limited evidence on whether increased knowledge of stroke actually affects help-seeking behaviour. Issues that are not fully addressed by the research reported in the literature include: detailed information about the salience and frequency of messages that prove most effective in facilitating earlier presentation and more consideration as to whether campaigns should be universal or targeted. A short review is required to consolidate present knowledge about key messages that need to be communicated and the best means of doing so. Ideally, an MRC complex intervention is desirable, which would seek to test both individual components and the campaign as a whole to reduce delay to the diagnosis of stroke is needed. This would include piloting elements of the campaign with different population groups. An assessment of the optimal balance between national and locally based campaigns is needed. Testing public and professional awareness, accessibility and acceptability of the key messages is required. 2. Identification of the key components of acute care, including key competencies of staff, that lead to improved outcomes and subsequent piloting of systems to test how these can be most effectively implemented in routine clinical practice. If new models of care such as specialist hyperacute stroke centres are developed the impact on the rest of the stroke pathway will need to be evaluated. 3. A trial of the cost and clinical effectiveness of admission to general medical (acute admission) wards with onward referral to a stroke unit, compared with direct admission to a stroke unit. This is needed given that currently 80% of stroke patients are admitted to acute medical wards. 2

4 It is national policy that all stroke patients be admitted to a stroke unit as soon as possible. However, because presently most early care will be given within Medical Admissions Units (MAUs) and medical wards prior to admission to stroke units, further studies are required to assess the relative outcomes of patients admitted immediately to stroke units versus those who are not. More information is required about the skill and experience level of staff working within MAUs in order to ensure that the quality of care received by patients prior to transfer does not adversely affect outcomes. The Strategy endorses multidisciplinary team (MDT) working as an effective component of stroke care, however, more research is required to understand the optimal configuration of the multidisciplinary team. The Intercollegiate Stroke Working Party (ICSWP) National Clinical Guidelines for Stroke recommend that that a team includes a consultant physician, nurses, physiotherapists, occupational therapists, speech and language therapists, a neuroradiologist, a dietitian, a clinical psychologist, a pharmacist and social worker. The contribution of each profession s role to MDT stroke care working, needs to be better defined. An exploration is needed of what specialist stroke care actually means at the various stages of the stroke pathway. Subsequently, more information about how the MDT configuration might be applied or adapted to other non stroke unit inpatient settings such as MAUs and general medical wards, non inpatient settings in the community or longer term stroke care may be required. Evidence of the effectiveness of acute stroke units versus combined or rehabilitation stroke units is desirable and further definition of which components of acute stroke care are needed. How should MDT working be defined? The ICSWP guidelines state that the team should meet at least once a week for the exchange of information about individual patients and formal multidisciplinary assessment for inpatient rehabilitation, which should be documented. The effect of different configurations of MDT working has not been investigated, for example levels of joint working such as joint goal setting. This is a complex area where considerable qualitative research has been carried out. It is difficult to be prescriptive about the way in which teams should work because inevitably, for a variety of reasons, there will be considerable variation in local practice. The key issue therefore, is to highlight those aspects of MDT organisation and practice that appear crucial to securing optimal patient outcomes. Consideration also needs to be given to the organisation and practice of MDTs in a variety of settings. (Acute, rehabilitation, early supported discharge, and longer term). The results of observational studies on the use of telemedicine have been promising but there is a need for a well designed cluster randomised trial to determine the effectiveness and safety of introducing telemedicine for both the delivery of thrombolysis and other aspects of acute stroke care into the NHS. The Strategy suggests that hyperacute stroke care should be concentrated in specific units. Research is required to test patient outcomes in such settings. Is there a correlation between the number of patients treated on a unit and the outcomes? There is some evidence in the literature including some fairly weak stroke evidence that small units treating few patients have poorer outcomes 3

5 than those with a high turnover. What is the threshold for care to be delivered optimally? The cost effectiveness of any proposed system for acute management needs evaluation and the impact on the rest of the stroke pathway needs robust assessment. 4. Evaluation of different models of access to Transient Ischaemic Attack (TIA) services in different settings, e.g. direct access to daily clinics in secondary care versus immediate assessment and management in primary care with onward referral to secondary care. Different models of access to TIA services in different settings have not been evaluated robustly. Evaluation of different models of access to TIA services is required in different settings such as the merits of direct access to daily clinics in secondary care versus immediate assessment and management in primary care with onward referral to secondary care. 5. Estimation of the longer-term needs of patients (impairment, activity, participation, Quality of Life) at different time points post-stroke to help direct intervention studies to improve outcomes. There is no universal understanding of what is meant by long-term with studies including patients from six months to 21 years post-stroke as longterm survivors. Most of the evidence reports long-term impact or problems experienced after stroke, e.g. depression, quality of life, functional outcomes or handicap/participation. There is a lack of research identifying specific longterm needs of survivors and their carers and how these needs change over time. There is limited understanding of what the long-term needs might be after stroke and the extent to which these needs are stroke-specific or simply attributable to normal ageing. Participation is a relatively new concept and little research has been conducted into participation as a long-term outcome after stroke. The definition of participation is very broad and different researchers have interpreted it in different ways. No scale exists to measure participation in a stroke or elderly population; therefore measures used tend to be the same ones previously used to measure functional ability (e.g. London Handicap Scale, Frenchay Activities Index). Few interventions to provide long-term support after stroke have been reported. This is possibly because the exact nature of long-term needs is not well understood. Interventions that are reported in the literature show unclear effects and a range of different outcome measures have been used. It is unclear 4

6 as to how long support should be provided for, what form this support should take and who should provide it. Presently definitions do not fully incorporate user perceptions of need and how these might vary by social class, gender, age and ethnicity etc. Qualitative research is required to identify patient priorities and their determinants in the longer term. Definition and estimation of the longer term needs of stroke patients (impairment, activity, participation, QOL) are needed at different time points post stroke and the professional skills (specialist/generic) to assess and manage them are needed at each time point. Robust modelling needs to establish best practice to meet identified long-term life-after-stroke needs. 6. Evaluation of the effectiveness of rehabilitation interventions after the acute phase of stroke and into the longer term. The key areas for evaluations should include: - key components of effectiveness; - optimum content (techniques, treatment approaches, assistive technologies); - optimum delivery (frequency, duration, timing,); and - optimum structure (service provision and economic benefits). There is insufficient evidence about the most effective organisation and delivery of rehabilitation interventions in the longer term and more research is required to determine care pathways and correlate professional roles and responsibilities. Patient and carer perspectives on rehabilitation longer term have not been assessed. The nature of specialist input required, identification of skills and competencies required of a community based stroke service need further investigation. More research is required to determine the effectiveness of self-directed interventions or therapy programmes for patients. The needs for rehabilitation at different time points, particularly post one year, require estimation. (This could include type; eg motor v cognitive or high level v low level, or restoration v adaptation). The patient and carer perspectives on rehabilitation longer term should be assessed. A systematic review of available interventions for motor, functional, cognitive and emotional recovery and their applications to clinical practice is suggested. Robust research is needed to determine the effectiveness of components of rehabilitation interventions considered individually and in combination. 5

7 7. Identification of the relationship between patient numbers, dependency and staffing requirements with a view to providing more specific guidance on the appropriate staffing numbers and skills. Given the uncertainties of role definition, and present inchoate care pathways, determining training needs and optimal staff ratios require further investigation and analysis. Notwithstanding more definitive answers to these complex questions, there is a need to develop core competencies for all healthcare staff working with people who have had a stroke, including those of staff working in non-specialist areas. As there is a need to recognise that patient needs will change over time there is a matching need to ensure that competencies are continually updated to reflect these changes. Research is required to model the potential combinations of establishing appropriately resourced staff teams to cope with patients at different points along care pathways. More particularly: - How is the workforce in stroke services within acute hospital and community health and social services best organised and supported? - What is the balance of care provided by different components of the workforce and what care is provided by whom and when? - How will patients experience of the care that they receive be factored into the analysis? - What are the associations between the cost of care inputs, patients experiences of care quality and clinical outcomes? 8. Evaluation of the principle of extending specialist stroke unit care into the community. For example, a Medical Research Council framework approach to identifying the building blocks is required. There is little research investigating multi-disciplinary team care for people with stroke in the longer term (after early supported discharge). The ICSWP guidelines recommend that inpatient specialist stroke services provide coordinated multi-disciplinary care. Not enough is known about the optimal distribution and organisation of multi-disciplinary care after discharge from hospital. More particularly, the principle of extending specialist stroke unit care into the community requires further evaluation. A robust approach to identifying the building blocks of the intervention is required. Not enough is presently known about how MDT might be best applied in the longer-term and in community settings. There is little stroke specific evidence to inform how MDT working could be delivered at all stages for people with stroke. A Cochrane review indicates that therapy services at home can prevent deterioration in stroke patients. Four of the trials included MDT care but there is presently insufficient evidence from the analysis to suggest that this is a 6

8 more effective approach than conventional care. More research is required to investigate best practice in the organisation and deployment of multi-disciplinary stroke care after discharge from hospital. More particularly research in the following broad areas would be useful: - Is MDT follow up effective and/or cost effective after discharge from hospital? Should this team be a generic or specialist team? Should the composition of the team alter over time? There should be an exploration of the potential roles of community organisations and voluntary sector providers to support effective communitybased care. 9. Identification of how the training needs of stroke professionals can best be met. The needs of the stroke population, particularly longer term is not known (see sections above). The appropriate longer-term interventions are not well described (see sections above). The training of staff in different settings to manage the stroke patient s longerterm care needs investigating. The appropriate balance between specialised stroke care and more generic care for people with long-term / neurological conditions is unresolved. While there presently exists no strong evidence of a link between core competences and outcomes in stroke care, it is safe to assume that competency is a key requirement in delivering quality care and thus work to identify core competencies is required. Given the uncertainties about the needs of patients and the appropriateness of interventions in the longer term (see above) core competencies for the longer term will need to proceed in parallel with work concerned to delineate professional roles and responsibilities. The issues of training and retaining staff in the acute setting will require further research as acute treatments become more sophisticated and widespread. Identification of the core competencies of all staff groups in all settings where stroke patients are treated is needed, recognising that this work will need to proceed in parallel with work concerned to delineate professional roles and responsibilities. Systematic determination of training needs for and maintenance of competencies will require research support. Testing different models for spreading and sharing skills between professional groups is needed. How is the workforce in stroke services within acute hospital and community health and social services organised and supported? 7

9 What is the balance of care provided by different components of the workforce and what care is provided by whom and when? This work needs to proceed in parallel with research into longer-term needs etc. 10. Development of comprehensive outcome measures for stroke that can be universally adopted by the stroke community. Simple and widely applicable tools to measure the outcome of interventions should be developed. These tools may need to reflect the different stages of patient care pathways, and will need to be acceptable to all stakeholders. Research is required to develop common outcome measurement tools acceptable to all professional groups and to patients and their carers. 8