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Biggest Blind Spots in Stroke Care Evidence Announced by the Stroke Association

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The UK’s leading stroke charity, the Stroke Association, has announced the top areas of research needed to improve stroke care. These priorities are set by the people most affected – stroke survivors, carers, and professionals in stroke. The announcement marks the first UK-wide project to map priorities for stroke research that spans the entire stroke care pathway.

The top 10 priorities were established in the Stroke Priority Setting Partnership (Stroke PSP) using the robust and tested James Lind Alliance process. The charity is launching its findings in a new report, Shaping stroke research to rebuild lives: The Stroke Priority Setting Partnership results for investment. The report is available to researchers, funders, and health and social care decision-makers. It calls for significantly increased investment in stroke research to support the developments in treatment and care that will make the biggest difference to the lives of people affected by stroke and close the gap between research funding for stroke and other conditions.

The report sets the agenda for stroke research by identifying the areas that most urgently need investment. Two lists of 10 priority areas, ranked in order of importance, cover the stroke care pathway – the first in stroke prevention and acute care, and the second in rehabilitation and long-term care.

The top priorities include:

  • Identifying the best interventions to stop a stroke from happening for the first time (i.e., primary prevention). Stroke strikes every five minutes in the UK – we need increased investment in research so people can avoid the devastating effects of stroke in the first place.
  • Understanding the impact of mental and emotional (psychological) problems and how to reduce them. Three-quarters of stroke survivors experience a change in their mental health – we need research so people can overcome effects such as anxiety and depression after stroke.

Associate Professor Shirley Thomas, rehabilitation psychology at the University of Nottingham and steering group member, said: ‘The Stroke PSP provides robust guidance to researchers and funders on the areas of greatest need. It’s vital to direct funds to these areas so researchers can continue to work with people affected and professionals in stroke and generate research evidence. This research can inform improvements in treatment and care that will bring the most benefit to people affected by stroke. I look forward to using the Stroke PSP results in my research to increase evidence in these areas.’

Stroke survivors, carers for stroke survivors, and professionals from organisations including the British Association of Stroke Physicians, the Association of Chartered Physiotherapists in Neurology, the Royal College of General Practitioners, and others came together to decide on the Stroke PSP protocol and provided input at all key stages. The priority areas in the two lists revealed in the report were checked against existing evidence and sorted from over 4,000 questions about stroke from over 1,400 participants – 37% stroke survivors, 14% carers of stroke survivors, and 44% stroke professionals.

Juliet Bouverie OBE, chief executive at the Stroke Association, said: ‘One in five people will have a stroke in their lifetime. A stroke happens in the brain, the control centre for who we are and what we can do. Every stroke is unique because the brain is so complex and stroke can happen in any part of it. This means there are as many different impacts of stroke as there are stroke survivors, posing a huge challenge for stroke treatment and research. The Stroke PSP is a significant step towards improving stroke care by establishing where to focus investment for the greatest benefit. We have shone a light on blind spots where a lack of investment in research is holding people back from rebuilding their lives after a stroke. We must close the funding gap between stroke and other conditions.’

There are over 100,000 strokes in the UK every year, and there are over 1.3 million stroke survivors in the UK. However, the most recent figures from the UK Medical Research Council reveal that stroke research receives just 1.2% of public and charity health research spend (£30m of £2.56bn). This equates to less than £25 dedicated per stroke survivor per year, which compares to £161 per person living with cancer.

The charity is highlighting stark figures which show that investing £10 million into stroke cognitive rehabilitation research could save £725 million over 20 years, a saving of over 71 times the amount invested. Stroke costs NHS and social care £8.6 billion per year, so significant investment in stroke research and resulting interventions will save both lives and money.

Juliet Bouverie continues: ‘These uncertainties in the evidence to inform the best stroke care are a roadblock to reducing the devastating effects of stroke. We urge people affected by stroke and healthcare professionals to read our report, advocate for these priority areas, and get involved in research to address them.’

Dr Richard Francis, head of research at the Stroke Association, said: ‘Over the past 30 years, the Stroke Association has played a crucial role in supporting stroke research in the UK. The results of the Stroke PSP will set the direction of our research funding strategy so we can continue to make the greatest difference to the lives of stroke survivors and their carers.

‘But we can’t do this alone. Our charity is calling on more funders, researchers, and decision-makers to invest in and conduct research to address priority areas set by people most affected by stroke to ensure that stroke survivors have the support they need to rebuild their lives.

‘Thank you to everyone who has contributed to the Stroke PSP, in particular to the 1,400 stroke survivors, carers, and professionals who shared their views. We are committed to making sure that the current underfunding of stroke research is addressed as part of our vision for there to be fewer strokes and for people affected by stroke to get the help they need to live the best life they can.’

To read the full list of priorities and report visit their website.

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