The James Lind Alliance (JLA) Stroke Priority Setting Partnership involved stroke survivors, carers, and health-care and other professionals in setting the research agenda by identifying and prioritising evidence uncertainties.1 Investment in research to address these uncertainties can ensure that more lives are saved and rebuilt after stroke. Research has identified several interventions that improve outcomes for patients after ischaemic stroke (eg, stroke unit care, thrombolysis, or thrombectomy). However, stroke remains a leading cause of death and disability worldwide.2 Although age-standardised stroke mortality has decreased,2 specific interventions for people with haemorrhagic stroke are needed.
By 2035, in the UK, the incidence of stroke is expected to double compared with 2015.3 Even in people with mild disability or who make a complete physical recovery, fatigue and psychological issues can hugely affect quality of life. Further action is needed to improve interventions for primary and secondary stroke prevention, and rehabilitation to reduce the burden of stroke. However, only about 1·2% of research funding in the UK is spent on stroke,4 and the COVID-19 pandemic further reduced funding to this sector. Given the need for innovation in stroke care and restricted funds for research, the Stroke Priority Setting Partnership established a consensus on the priority areas to allocate resources that can have the greatest impact. In 2011, a JLA Partnership established research priorities on rehabilitation and long-term care,5 but priorities across the whole stroke pathway were still needed.
We followed the well established JLA priority setting processes to ensure useful outcomes.1 In July, 2019, a steering group was set up that could represent people affected, health-care and other professionals, and third sector organisations in stroke. From February to August, 2020, more than 1400 stroke survivors, carers, and professionals participated in an online survey to collect unanswered questions for research. The submitted questions were checked against the partnership scope, existing evidence, and collated to form uncertainties. From February to March, 2021, stroke survivors, carers, and professionals participated in online surveys to prioritise uncertainties. In April, 2021, online workshops with stroke survivors, carers, and professionals reached a consensus on the top ten uncertainties.
The Stroke Priority Setting Partnership generated two lists with ten uncertainties, ranked in order of importance, one for prevention and acute care and the other for rehabilitation and long-term care (table ; appendix pp 2–3). Six of the priority areas address stroke-related impairments. Three areas address stroke prevention, three focus on stroke treatment, and eight relate to delivery and experience of care. Psychological and cognitive effects remain top priorities since the previous JLA Partnership.
Table.
Top priorities for stroke research
| Prevention, diagnosis, and treatment | Rehabilitation and long-term care | |
|---|---|---|
| 1 | Best interventions for primary stroke prevention | Assessment of the impact of psychological effects and interventions to reduce them |
| 2 | Recognition and early diagnosis of stroke and transient ischaemic attack | Evaluation of cognitive disfunction and interventions to reduce it |
| 3 | Evaluation of risks and benefits of intracerebral haemorrhage treatments | Assessment of communication problems and interventions to reduce them |
| 4 | New therapies for neuroprotection | Understanding fatigue and how to reduce it |
| 5 | Risk of secondary stroke and secondary prevention | Organisation of community stroke services to meet all survivor needs |
| 6 | Availability of thrombectomy to more patients with ischaemic stroke | Evaluation of long-term effects on activities of daily living and interventions to tackle these effects |
| 7 | Interventions to delay changes in brain function after subarachnoid haemorrhage | Evaluation of the duration, intensity, location, and frequency of therapeutical interventions to achieve long-term outcomes |
| 8 | Strategies to reduce complications of stroke | Improvement of carers support |
| 9 | Evaluation of risks and benefits, and personalised anticoagulation treatment | Strength and exercise interventions for recovery and secondary stroke prevention |
| 10 | Effect of comorbidities and health characteristics on stroke | Improving stroke survivor and carer experience of the stroke pathway |
We provide a clear roadmap for research investment that can make the greatest impact to improve stroke outcomes. These priorities should inform the activities of funding bodies, researchers, and decision makers investing in stroke research.
We declare no competing interests. Members of the Stroke Priority Setting Partnership Steering group are listed in the appendix (p 1).
Contributor Information
Stroke Priority Setting Partnership Steering Group:
Gillian Mead, Shirley Thomas, Rustam Al-Shahi Salman, Christine Roffe, Alex Pollock, Sally Davenport, Eirini Kontou, Katie Chadd, Ulrike Hammerbeck, Adewale O Adebajo, Catherine Elizabeth Lightbody, Jenny Crow, Niamh Kennedy, Nicholas Evans, and Thompson G. Robinson
Supplementary Material
References
- 1.James Lind Alliance JLA guidebook. March 2021. https://www.jla.nihr.ac.uk/jla-guidebook/
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