Transforming stroke rehabilitation research and care
Submitting InstitutionUniversity of Leeds
Unit of AssessmentPublic Health, Health Services and Primary Care
Summary Impact TypeHealth
Research Subject Area(s)
Medical and Health Sciences: Clinical Sciences, Neurosciences, Public Health and Health Services
Summary of the impact
Forster, House and Young have played a leading role in establishing the
importance of long-term psychological and social distress after stroke,
shifting the clinical emphasis (and evidence base) in stroke care from a
limited focus on physical recovery to acceptance of the importance of
psychological and social factors. Evidence we have generated has informed
the stroke care pathway in national and international clinical guidelines
that influence stroke service delivery, by providing guidance to clinical
teams on psychological treatments after stroke and information provision.
In tandem we have developed the methodology of stroke rehabilitation
research, involving clinical staff in delivery of multi-site studies and
thereby enhancing evidenced-based stroke care.
Every year approximately 110,000 people in England have a stroke - the
third largest cause of death and the commonest cause of severe disability
in the community. It is estimated that stroke costs the NHS over £2.5
billion annually, accounting for 6% of total NHS and social services
expenditure. A particular focus of our research has been to explore and
address psychological and social recovery and their influences on the
longer-term quality of life of stroke survivors.
Improving stroke care
Work published by staff at the University of Leeds since 1995 has
highlighted the poor psycho- social outcome for stroke survivors and their
families. Since then we have explored the difficulties faced by stroke
survivors and their carers through a range of studies (all led by Forster,
Young and /or House) including: systematic literature reviews; cohort
studies of the course and impact on physical outcomes of depressive
symptoms (1, 2) and the incidence of falls (an important cause of
anxiety) (3, cited >190 times); qualitative work addressing
adjustment after stroke; and surveys of unmet need in stroke survivors.
Building on this research, which emphasises the need for stroke
rehabilitation to address psychological and social problems as well as
physical ones, we have developed interventions and led evaluations
(randomised trials) addressing pre-discharge preparation in stroke units
and post-discharge care. The following list gives such interventions (and
where available, their effects):
- education and goal setting: gives significant reduction in patient
- caregiver training immediately post stroke: has no benefit (5).
- evaluation of home physiotherapy and day hospital care: the latter
showed no benefit
- physical therapy later after stroke: improves mobility, but has no
long-term effect (6)
- advice and guidance provided by a specialist nurse: showed there is no
proved strategy addressing the psychosocial difficulties of stroke
patients and their families (7, cited >110 times)
- UK national policy of routine re-assessment of disabled patients and
their carers at 6 months after stroke onset (the National Service
Framework for Older People): showed no benefit (8)
- counselling and peer support: on-going work
- continuity of care in stroke services: on-going work
- structured assessment by a stroke care co-ordinator: on-going work.
Our primary randomised trial work, specifically evaluation of input from
a specialist nurse, contributed to the Cochrane Review of `stroke liaison
Development of research approach — randomised trials of complex
In this work we have shown that it is possible to include mixed methods
(qualitative, process and realist evaluations) and health economic
analysis in trials of complex interventions even in the frail elderly
population that constitutes most stroke survivors. The trials have
progressed from small single-centre studies to two-centre studies
culminating recently with the implementation of two multicentre studies
(36 and 32 centres) recruiting 900 and 800 patients respectively, making
them the world's largest completed randomised trials in stroke
rehabilitation (Forster, Chief Investigator for both). The pioneering
nature of this work is evidenced by the former of these studies, the TRACS
trial, being the first stroke rehabilitation trial funded by the MRC (6).
Research presented here was led by: John Young Consultant Physician/
Professor of Elderly Care 2005-present; Allan House, Professor of Liaison
Psychiatry, 1999-present; Anne Forster, Research Physiotherapist/
Professor in Stroke Rehabilitation 1997-present
References to the research
1. House A, Knapp P, Bamford J, Vail A. Mortality at 12 and 24
months after stroke may be associated with depressive symptoms at one
month. Stroke 2001;32:696-701. Showed early distress
predicts 12 month mortality independently of disability.
2. West R, Hill K, Hewison J, Knapp P, House A.
Psychological disorders after stroke are an important influence on
functional outcomes: A prospective cohort study. Stroke
2010;41:1723-7. Showed distress predicts rehabilitation outcomes
independently of disability
3. Forster A, Young J. Incidence and consequences of falls due to
stroke: a systematic inquiry. Brit Med J 1995;311:83-6. Demonstrated
high rate of falls and their social and emotional impact.
4. Smith J, Forster A, Young J. A randomised trial to evaluate an
education programme for patients and carers after stroke. Clinical
Rehabilitation 2004;18:726-736. Demonstrated education reduces
anxiety without increasing knowledge.
5. Forster A, Dickerson J, Young J, Patel A, Kalra L, Nixon
J, Smithard D, Knapp M, Holloway I, Anwar S, Farrin A. A
structured training programme for caregivers of inpatients after stroke
(TRACS): a cluster randomised controlled trial and cost-effectiveness
analysis. The Lancet. Online Sep 18, 2013: http://dx.doi.org/10.1016/S0140-6736(13)61603-7.
Showed early training of caregivers does not improve outcomes.
6. Green J, Forster A, Bogle S, Young J. Physiotherapy
for patients with mobility problems more than 1 year after stroke: a
randomised controlled trial. The Lancet 2002; 359: 199-203. Showed
late physiotherapy improves mobility but benefits are not sustained when
7. Forster A, Young J. Specialist nurse support for patients with
stroke in the community: a randomised trial. BMJ 1996;312:1642-6.
Showed using specialist nurses did not improve outcomes
8. Forster A, Young J, Green J, Patterson C, Wanklyn P, Smith J,
Murray J, Wild H, Bogle S, Lowson K. Structured re-assessment system at
six months after a disabling stroke: a randomised controlled trial with
resource use and cost study. Age and Ageing 2009;38:576-83. Showed
that structured secondary care based 6 month assessment did not improve
12 month outcomes.
Forster A, Young J, Bhakta B, Farrin A, Murray
J, Knapp M, Patel A, House A, Hewison J, Bhakta B,
Powell J, Steele V, Brady T. Improving patient and carer centred
outcomes in longer- term stroke care. £1.9 million NIHR Programme
Grant October 2007 for 60 months.
Forster A, Young J, Farrin A, Kalra L, Knapp M,
Nixon J, Patel A, Smithard D. A cluster randomised controlled
trial of a structured training programme for caregivers of in-patients
after stroke. £2,029,049 MRC Clinical Trials Grant April 2007,
53 months. The first ever MRC funded trial in stroke rehabilitation.
Details of the impact
The UK Stroke Association used our work to inform development of their
nationally provided community support services. Specific changes based on
our work include a significant move away from input primarily from a
stroke liaison worker to a more focused patient-centred approach; and an
increased focus on identifying and addressing, on an individual basis, the
long-term problems faced by each stroke survivor and his/her carers. This
impact has had wide reach: the Stroke Association currently provides 340
commissioned services with a contract income of £12.3 million and many
thousands of clients: e.g. in 2011/12 Stroke Association staff saw 35,940
Our findings also have reach beyond the UK. Based on our
work, Clinical Guidelines for Stroke in several countries (including the
UK, Scotland, Canada, New Zealand and Australia) now provide guidance to
health and social care workers on the importance of providing information
combined with educational sessions, rather than information alone. Lack of
appropriate information is one of the commonest concerns of patients and
their families (up to 50% report lack of information) and can hinder
compliance with secondary prevention and access to relevant community
services. We reported that information combined with educational sessions
improved knowledge and patient mood and was more effective than providing
information only. Our findings are cited in all these Clinical Guidelines
for Stroke (A-D), among others. Provision of information about
diagnosis and prognosis is a component of the National Sentinel Audit for
Stroke, which assesses compliance with guidelines. The latest audit (G)
reported some improvement in communication with patients.
Clinical Guidelines for Stroke have significant influence on service
provision: for example, on development of services in London (E).
This development work, which references our underpinning research, is part
of a major initiative to redesign stroke services across London, where
6,000 people are left with impairments following stroke each year.
Assessment six months post stroke is a component of the National Stroke
Strategy, and the development of assessment procedures is informed by our
finding that outcomes following secondary care- based assessment
six months post-stroke were no different from those following usual care
(generally no formal assessment). Our trial on which this finding is based
(8) is highlighted by the UK Stroke Improvement Programme (F),
an NHS initiative set up to provide national support for local improvement
of stroke services and the implementation of the National Stroke Strategy.
and is informing UK stroke services as they develop methods to implement
the six month assessment component of the National Stroke Strategy.
Addressing psychological need is now included in the UK National Stroke
Strategy, and in the annual National Sentinel Audit for Stroke (G)
that underpins its implementation, as an important component of stroke
care, based on our work highlighting the importance of psychological
outcomes after stroke, which raised the profile of this previously
neglected area. House contributed to the development of the stepped care
model for psychological interventions after stroke (A) which has
been developed by the Stroke Improvement Programme for national
Forster, House and Young are authors of five stroke-related reviews
within the Cochrane Library, the premier resource for the synthesis of
evidence-based health care, which are used across the world as the
foundation stone for clinical guidelines: these reviews provide the
evidence for and are cited in Clinical Guidelines for stroke in the UK,
Scotland, Australia and Canada (A-D) and elsewhere. These
guidelines are the national templates for stroke service provision.
Our research was supported by (among others) the NIHR HTA and SDO
programmes, MRC and The Stroke Association, further testifying to its
direct clinical relevance, and underpinned by the development of a
nationwide stroke research network and comprehensive research network.
Forster is founding clinical director of the regional stroke network and
House was founding clinical director of the regional comprehensive
research network - so that development and implementation of our research
has been intimately integrated with NIHR policy.
In our leading roles in the stroke research network, we have directly
evidenced the potential of research networks for stroke rehabilitation
research. This potential has been realised in our TRACS trial in which 36
participating centres recruited 900 patient and caregiver dyads, making it
the world's largest completed stroke rehabilitation trial (5). This
approach, novel in stroke research, has been further strengthened by
tandem economic and process evaluations. TRACS has demonstrated that large
rehabilitation trials are feasible and provides a template for large
pragmatic trials in rehabilitation. The study acted as an important
vehicle to engage clinical teams from across the UK in implementation and
delivery of research. Enhancing research methodology is a policy of
charity funders, for example AgeUK and The Stroke Association. The
importance of TRACS in the stroke rehabilitation research landscape is
evidenced by a public statement made by a former National Clinical Lead
for the NHS Stroke Improvement Programme. "TRACS has been a very
significant study for two reasons. Firstly, the results of TRACS should
help provide important clarity on how stroke carers can best be supported.
Secondly, the engagement of front-line clinical staff in the running of
the [TRACS] trial has been hugely successful. Both these factors will help
raise the quality of care and support for people who have had a stroke and
their carers." (H).
Sources to corroborate the impact
A-D: national clinical guidelines
A. Royal College of Physicians, National Clinical Guidelines for Stroke,
Fourth edition, London 2012, ISBN 978-1-86016-493-4. http://www.rcplondon.ac.uk/publications/national-clinical-guidelines-stroke.
Five papers cited:
1) Long Term Management in respect of moderately disabled patients or
carers from a structured reassessment system at 6 months post-stroke (page
2) Information provision for stroke patients and their carers (page 130)
3) Depression and anxiety which may be associated with mortality at 12
and 24 months after stroke (page 113)
4) Interventions for treating depression after stroke (page 114)
5) Pharmaceutical interventions for emotionalism after stroke (page 115)
B. Canadian Best Practice Recommendations for Stroke Care: Ottawa 2006.
The Canadian Stroke Strategy CMAJ JAMC, December 2 2008, Volume 179 (12) http://www.strokecenter.org/wp-content/uploads/2011/08/CSSManualENG_WEB_Sept07.pdf.
Three papers cited:
1) Information provision for stroke patients and their caregivers (page
2) Reference to the Bradford Community stroke trial (page E60)
3) Interventions for treating depression after stroke (page E67)
C. Clinical Guidelines for Stroke Management (2010). National Stroke
Foundation Australia. http://strokefoundation.com.au/site/media/Clinical_Guidelines_Acute_Management_Recommendations_2010.pdf.
13 papers cited, including:
1) Specialist nurse support for patients with stroke in the community
2) Structure re-assessment system at 6 months after a disabling stroke
3) Information provision for stroke patients and their caregivers (pages
4) Carer support during the recovery process (page 117)
5) Review of longer-term problems after a disabling stroke - behavioural
change (p 108)
6) Physiotherapy for patients with mobility problems more than 1 year
after stroke - falls (p 110)
7) A comparative cost-effectiveness study - community rehabilitation
8) Mood disorders in the year after first stroke (page 107)
9) Interventions for preventing depression after stroke (pages 27 &
10) Pharmaceutical interventions for emotionalism after stroke (pages 27
D. Scottish Intercollegiate Guidelines Network. Management of patients
with stroke: rehabilitation, prevention and management of complications,
and discharge planning: a national clinical guideline. June 2010. http://www.sign.ac.uk/pdf/sign118.pdf.
Five papers cited:
(1) Reference to the Bradford Community stroke trial - results at 6
months (page 51)
(2) Information provision for stroke patients and their caregivers (page
(3) Interventions for preventing depression after stroke (pages 43 &
(4) Management of depression after stroke - pharmacological therapies
(5) Pharmaceutical interventions for emotionalism after stroke —
emotional ability (pages 43-4)
E-F: impact on local service
E. Stroke rehabilitation guide: supporting London commissioners to
commission quality services in 2010/11 NHS Healthcare for London. November
2009. Three papers cited (pages 11, 27, 40, 45). http://www.londonprogrammes.nhs.uk/wp-content/uploads/2011/03/Acute-Stroke-Rehabilitation-Guide.pdf
F. Department of Health Stroke Improvement Plan http://www.improvement.nhs.uk/stroke/Reviewsforstrokepatients/Reviewsevidence/tabid/173/Default.aspx
G. Intercollegiate Stroke Working Party. 2011. Public Report of National
Sentinel Stroke Audit 2010. Royal College of Physicians, London.
Impact of Research Methodology
H. Statement by a former National Clinical Lead for the NHS Stroke
Improvement confirming the importance of TRACS in the stroke
rehabilitation research landscape. Available at http://www.crncc.nihr.ac.uk/NR/rdonlyres/F7881FF8-5E53-476D-83F9-FD8B3FB54811/0/SRNTRACSEBNFTNWFEB2011.pdf
which should be accessed via http://www.crncc.nihr.ac.uk/about_us/stroke_research_network/health_professionals/impact_on_clinical_practice/index