South London Stroke Register: Informing Innovation in Stroke Care
Submitting Institution
King's College LondonUnit of Assessment
Public Health, Health Services and Primary CareSummary Impact Type
HealthResearch Subject Area(s)
Medical and Health Sciences: Neurosciences, Public Health and Health Services
Summary of the impact
The King's South London Stroke Register is the world's longest running,
population-based stroke
research register, assessing the incidence of stroke; the acute and
long-term needs of stroke
patients; and quality of stroke care. The South London Stroke Register
provided data and analyses
that informed the Parliamentary Public Accounts Committee report on
stroke, the National Strategy
for Stroke, and contributed to two National Audit Office reports on acute
and longer-term stroke
care. The latter contributed to a major service reconfiguration in London,
which has led to lower
mortality and more efficient use of health care resources for stroke. The
King's South London
Stroke Register provides a platform for designing and evaluating new
models of stroke care,
including the largest trial of Early Supported Discharge, a cost-effective
intervention which is now
provided in 66% of hospitals in England, as well as being rolled out
internationally.
Underpinning research
The South London Stroke Register at King's collects data for stroke
incidence and stroke
outcomes (including mortality, morbidity and quality of life) in a
well-defined multi-ethnic population.
The South London Stroke Register is led by Professor Charles Wolfe
(King's, 1988 to present),
Professor Anthony Rudd (King's, 1990 to present), and Dr Christopher
McKevitt (King's, 1994 to
present). To date we have collected detailed information from almost 5,000
stroke patients in the
Register area, with each patient followed up at 3 months and annually
after stroke, for life.
King's stroke research has: 1) measured the incidence of stroke and its
immediate and long-term
consequences for patients, contributing to understanding needs for
services; 2) provided evidence
of the effectiveness of Early Supported Discharge and other models of
post-stroke care;
3) measured the quality and cost-effectiveness of care; and 4) explored
patient and carer
perspectives of need and outcome and developed a framework for
patient/carer engagement in
stroke research and service development in the UK and Europe.
King's research provided epidemiological estimates of the needs for
stroke care
From its first key study (Stewart
et al., 1999), the South London Stroke Register has continued to
report changing patterns in stroke incidence since 1995, with a focus on
ethnic variations in risk
(Heuschmann et al.,
2008). Our research showed that stroke risk and stroke sub-types
vary
substantially between ethnic groups, with a large proportion of strokes
occurring in people with
untreated risk factors including hypertension with limited
improvement in detecting these risk
factors over time (Heuschmann
et al., 2008). We have used Register data to show that 20-30% of
survivors have a poor range of functional outcomes (e.g. walking
ability) up to ten years after
stroke (Wolfe et al.
2011), over half of all stroke patients have depression (Ayerbe et al., 2011),
and stroke has a substantial long-term impact through cognitive impairment
(Douiri et al., 2013).
We and other research groups have used our epidemiological data to quantify
risk of stroke and
needs for long term care, as well as to develop interventions to reduce
the significantly poor
outcomes of stroke survivors.
King's research provided evidence of the effectiveness of Early
Supported Discharge
The South London Stroke Register team conducted the first and largest
randomised trial to assess
the clinical effectiveness of an Early Supported Discharge (ESD) policy (Rudd et al., 1997).
This
study provided evidence that outcomes following ESD were comparable to
conventional hospital
and community care, while the length of hospital stay was substantially
reduced. King's contributed
data and co-authored a meta-analysis that pooled data on the effectiveness
of ESD internationally
(Langhorne et al.,
2005), showing that appropriately resourced ESD services, provided
for selected
groups of stroke patients, can reduce long-term dependency and admission
to institutional care as
well as shortening hospital stays. Subsequently, the King's group has
reported on the cost-
effectiveness of ESD (Saka
et al., 2009).
King's researchers led and co-ordinated Europe-wide research on stroke
The team has co-ordinated a programme of collaborative research across the
European Union with
a focus on explaining variations in incidence (Heuchmann
et al. 2009), quality and costs of stroke
care in Europe (Grieve
et al, 2001) and outcomes (Heuschmann
et al., 2011). These studies
highlighted the high costs and poor outcomes associated with acute stroke
care in the UK,
contributing to making the case for more efficient service models that
provide higher quality care.
They also showed wide variations in quality of stroke care and
implementation of evidence-based
practice. The studies were the catalyst for research registers being
established in other European
centres which have enabled on-going comparative research to improve the
quality of stoke care.
King's researchers engaged with patients and families to inform stroke
research
The King's stroke research programme is informed by an active Stroke
Patient and Family Group,
established since 2005, with over 20 people participating in 6 research
meetings a year, at which
research priorities are identified and research methods refined. The group
contributed to the
development of a national survey of long term need that has informed the
Stroke Association's
policy on longer term care (McKevitt
et al., 2011). The group also produces a research newsletter
sent to 1,600 Stroke Register patients twice a year. It has contributed to
the national Stroke
Research Network strategy for public and patient involvement (PPI) in
research and service
development and to the European developments in PPI. The group is linked
to a social science
programme embedded within the Stroke Register; our European Programme has
also focused on
patient and public engagement well as facilitating patients and carers
involvement in designing
studies and tools for research and the dissemination of results.
References to the research
Grieve, R.,
et al. (2001) A comparison of the costs and survival of hospital-admitted
stroke patients
across Europe. Stroke 32:1684-91. doi:
10.1161/01.STR.32.7.1684
Heuschmann,
P.U., et al. (2008) Ethnic group disparities in ten-year trends in
stroke incidence and
vascular risk factors: the South London Stroke Register (SLSR). Stroke
39 (8):2204-210. doi:
10.1161/STROKEAHA.107.507285
Heuschmann PU
et al. (2009) Incidence of stroke in Europe at the beginning of the 21st
century.
Stroke. 2009 May;40(5):1557-63. doi: 10.1161/STROKEAHA.108.535088.
Heuschmann PU
et al. (2011) Three-month stroke outcome: the European Registers of Stroke
(EROS) investigators. Neurology 76:159-65. doi:
10.1212/WNL.0b013e318206ca1e
Langhorne, P.,
et al. (2005) Early supported discharge services for stroke patients: a
meta-analysis
of individual patients' data. Lancet 365 (9458):501-6.
(doi:10.1016/S0140-6736(05)17868-4)
McKevitt, C.,
et al. (2011) Self-reported long term needs after stroke. Stroke 42:1398-1403.
doi:
10.1161/STROKEAHA.110.598839
Rudd, A.G.,
Wolfe, C.D., et al. (1997) Randomised controlled trial to evaluate early
discharge
scheme for patients with stroke. BMJ 315 (7115):1039-44.
Saka, O., et
al. (2009) Cost-Effectiveness of Stroke Unit Care Followed by Early
Supported
Discharge. Stroke 40:24-29. doi: 10.1161/STROKEAHA.108.518043
Stewart, J.,
et al. (1999) Ethnic differences in stroke incidence. The South London
Stroke Register.
BMJ 318:967-971.
Wolfe, C.D., et
al. (2011) Estimates of outcomes up to ten years after stroke: analysis
from the
prospective South London Stroke Register. PLoS Med. 8(5):e1001033.
doi:
10.1371/journal.pmed.1001033
Research Grants
UK Stroke Survivor Needs Survey. Redfern, J., et al. The Stroke
Association, 2009: £81K.
Modelling, evaluation and implementing cost effective services to reduce
the impact of stroke.
Wolfe, C et al. NIHR Programme Grant for Applied Research, 2008-2013:
£1.134m.
Identifying the long-term needs of stroke survivors and modelling
implications for innovative
services. McKevitt et al. NIHR, Research for Patient Benefit, 2008-2010:
£226k.
The South London Stroke Register. Wolfe, C. Department of Health,
2003-2007: £300k.
European variation in stroke interventions from patients, carers,
primary, ambulatory, community,
and hospital services: its impact on outcomes and costs. Wolfe, C.
European Community BIOMED
2 Programme, 1996-1998: £574k.
Details of the impact
King's stroke research has had substantial impact through translation
into national and local
policies for stroke care, leading to improved commissioning and delivery
of stroke services. This
has contributed to reductions in mortality and cost savings for health
services, mainly through
transformation of services in cities and the implementation of Early
Supported Discharge, the latter
also being rolled out internationally. The ultimate beneficiaries of these
impacts are patients with
stroke, as well as their family members, who benefit from better health,
less disability and longer
lives. Other stakeholders benefit from our research through high quality
evidence to inform policy.
Such beneficiaries include the government and non-governmental
policy-makers, commissioners
and providers of health and social care, and the voluntary sector
including the Stroke Association
and aphasia charities.
King's research influences national policy for stroke
South London Stroke Register data informed the Department of Health National
Stroke Strategy on
the need for acute and longer term stroke care. King's data informed and
were embedded into
`Action
on Stroke Services: An Evaluation Toolkit (ASSET) for providers and for
commissioners'
which is cited as a `key resource' in Annex B of the National Stroke
Strategy. King's was also
commissioned by the Department of Health to develop recommendations for
the top
ten priorities in stroke service research.
The South London Stroke Register team was commissioned by the
National Audit Office (NAO) to write an annex to the report on
stroke care (NAO, 2010: `Progress
in improving stroke care').
This utilised King's estimates for risk of stroke, long term outcomes and
survival to inform recommendations for stroke care. King's data were used
to model cost-effective
options for stroke care (NAO, 2010: `Report
on the findings from our modelling of stroke care provision',
pages 15-16), informing the Parliamentary
Public Accounts Committee (2010) report on
the need for a step change in stroke care.
King's research informs major service reconfiguration in London
In response to Lord Darzi's 2007 report `Healthcare for London: A
Framework for Action', South
London Stroke Register data on incidence and patient outcomes were used by
Healthcare for
London to develop a Stroke
Strategy for London (2008). King's data were specifically employed
to estimate the number of people who can be expected to have a stroke and
thereby the number of
Hyper Acute Stroke Unit (HASU) and Acute Stroke Unit (ASU) beds required
in the city, and to
develop models of cost effective configurations of services (page 7).
Wolfe and Rudd led work
streams for the strategy development. The reconfiguration, implemented in
2010, consisted of 8
HASUs and 24 Stroke Units. An evaluation (Hunter
et al., 2013) found an estimated 12% reduction
in deaths at 90 days, as well as a reduction in the median length of stay,
with an estimated cost
saving of £811 per patient (2011) in London after the reconfiguration.
King's provides professional leadership and research evidence to
inform clinical guidelines
The South London Stroke Register leadership has also been instrumental in
improving stroke care
nationally. Professor
Anthony Rudd from King's has chaired the Royal College of
Physicians'
(RCP) Intercollegiate Stroke Working Party (ISWP) since its
inception in 1995. The fourth edition of
the Working Party's National
Clinical Guideline for Stroke (2012) recommends that Early
Supported Discharge should be a component of stroke care. The Guidelines
also discuss the
unmet needs of stroke patients (following McKevitt et al., 2011 cited
above). The RCP's National
Sentinel Stroke Audit 2010
recommended that Early Supported Discharge should be made
available in all districts.' (page 11). Early Supported Discharge is now
provided by 66% of English
hospitals. (RCP Sentinel Audit 2012) and has been implemented
internationally (Fisher
et al.2011).
Earlier editions of the ICSWP National Stroke Guidelines, which also cite
King's stroke
research, have been used to inform the 2008 National Institute of
Health and Care Excellence
(NICE) guidelines
on stroke and the 2010 Stroke
Quality Standard, the latter recommending Early
Supported Discharge as a component of the rehabilitation pathway. In a
report authored by King's
stroke researchers, and using methods developed by King's researchers to
estimate the quality of
stroke care, data from the RCP National Stroke Audit data for the first 72
hours of stroke care in
NHS facilities, demonstrated reduced mortality in hospitals with better
organised stroke care (Bray
et al., 2013).
The work of King's is also influential in the NHS Improvement
initiative for stroke care.
For instance, the ISWP documents are referenced throughout their website
and publications,
especially in terms of calling for pathways that include Early Supported
Discharge.
King's works with voluntary sector and patients to articulate needs
The Stroke Association (SA) recently published `Saving
Lives. 20 years of investment in vital stroke research'
that identifies how the research it has funded has led to patient benefit.
This report
highlights King's research in developing and evaluating Early Supported
Discharge. The results of
the Stroke Association 2010 Stroke
Survivor Needs survey have informed Stroke Association
policy, and identified stroke survivor priorities, for areas of research
and service development
which have not previously been addressed, for example high prevalence of
stroke-related fatigue.
Sources to corroborate the impact
Department of Health: National
Stroke Strategy
`Action
on Stroke Services: An Evaluation Toolkit (ASSET) for providers and for
commissioners'
Top
ten priorities in stroke services research
House of Commons Committee of Public Accounts. Progress
in improving stroke care. Twenty-sixth
report of Session 2009-10.
NHS Improvement. Stroke
Improvement: Early Supported Discharge
NHS London. Healthcare
for London: A framework for action. London: NHS, 2009:
National Audit Office (2010). Progress
in improving stroke care. Second report. London: National
Audit Office. Report
on the findings from our modelling of stroke care provision
National Institute for Health and Care Excellence:
National
clinical guideline for diagnosis and initial management of acute stroke
and transient ischaemic attack (TIA)
Stroke
quality standard (stroke rehabilitation pathway recommends Early
Supported Discharge)
Royal College of Physicians Intercollegiate Stroke Working Party
National
Clinical Guideline for Stroke. Fourth Edition. 2012.
National
Sentinel Stroke Audit 2010
Stroke
Improvement National Audit Programme:
Published Evidence on Implementation
Bray BD et al.
(2013) Associations between the organisation of stroke services, process
of care,
and mortality in England: prospective cohort study. BMJ 346:f2827.
doi: 10.1136/bmj.f2827.
Fisher RJ et
al. (2011) A consensus on stroke: early supported discharge. Stroke
42:1392-7. doi:
10.1161/STROKEAHA.110.606285
Hunter
RM et al. (2013) Impact on clinical and cost outcomes of a
centralized approach to acute
stroke care in London: a comparative effectiveness before and after model.
PLoS One. 8:e70420.
doi: 10.1371/journal.pone.0070420.
The Stroke Association
Stroke Association (2012) Saving
Lives. 20 years of investment in vital stroke research (page 33)
Stroke Association (2010) UK
Stroke Survivor Needs Survey