This research project is a Programme Grant for Applied Research co-funded by the Stroke Association and the National Institute for Health and Care Research.

Why is this research needed?

Half of all stroke survivors experience fatigue, a lack of mental and/or physical energy that - unlike tiredness - does not get any better with rest. Fatigue can have many negative effects on the lives of stroke survivors and their loved ones. These include emotional challenges, difficulty engaging in rehab, and delays in returning to work or school.

These difficulties happen partly because we don't have much evidence about what works to treat or manage post-stroke fatigue, so stroke survivors often end up figuring things out for themselves.

However, there are self-management programmes for other conditions that cause fatigue. One of these is FACETS, which was originally designed for and by people with multiple sclerosis (MS). There is good evidence that it can help people manage fatigue caused by MS.

While the causes of fatigue may be different for MS and stroke, the impacts are similar. This makes FACETS a good candidate for adapting so that stroke survivors can use it.

In fact, FACETS' three key components are often used by stroke survivors to help with fatigue, though they may be discovered informally through personal experience rather than through a training programme. These components are:

  • Normalising the experience of fatigue
  • Using available energy more effectively
  • Developing helpful thinking styles about fatigue

What are the aims of this research?

The COMbAT Fatigue team will work towards their aims with a team of stroke survivors, healthcare professionals and other stroke experts.

First, they will develop a web-based version of FACETS that's tailored to the needs of stroke survivors.

The team will run a series of focus groups and interviews on managing post-stroke fatigue in order to understand what people affected by stroke might want and need out of a fatigue management programme. They will make sure to include a range of stroke survivors to fully understand different needs - for example, someone returning to work after a stroke might manage fatigue in a very different way from a stroke survivor who is retired.

People who take part in these interviews and focus groups will be invited to work with the COMbAT Fatigue team to co-design the new version of FACETS. Together, they will explore different ways to adapt it. Once they've settled on a prototype version, they'll investigate any challenges to implementing it and get feedback from clinicians and potential users – for example, whether the programme might need to be tailored depending on the severity of someone's stroke.

Next, small groups of users will be asked to work through the prototype programme and give feedback on usability and impact which the team will use to develop the final version of the programme.

The team will then run a small study with 40 people to understand whether the programme is feasible to deliver and acceptable for stroke survivors.

Using the final version, the team will run a large trial with 600 stroke survivors. Half of the participants will trial the programme while the other half will get our information leaflet about fatigue - this will mean Grace, Jonathan and the team can understand whether the programme works better than simply providing information on fatigue.

Throughout the project, the team will also share their findings with people affected by stroke and other members of the stroke community, work with commissioners to find ways to influence healthcare policies about fatigue, and find ways to train healthcare professionals to deliver the programme.

What is the benefit of this research?

Despite the sometimes debilitating effects of fatigue, many stroke survivors who experience fatigue don't receive any information, advice or support. COMbAT Fatigue could change that, making it possible for more stroke survivors to manage fatigue. Effective fatigue management in turn should mean that stroke survivors are more able to gain or regain independence and experience improved quality of life.

What PSP priorities does this research link to?

From 2019 to 2021, we worked with the James Lind Alliance on the Stroke Priority Setting Partnership (PSP). During the PSP process, we collaborated with people with lived experience of stroke and stroke professionals to find out what they thought were the top priorities in stroke research. From this, we identified the top ten priorities in two areas: prevention, diagnosis and short-term care, and rehabilitation and long-term care.

Now, when researchers apply to us for funding, we require that their work addresses at least one of these priorities, or a priority from the Childhood Neurological Disabilities PSP Top 10 as it relates to childhood stroke.

COMbAT Fatigue addresses the following priority from the Stroke PSP:

  • Rehabilitation and long-term care 4: Recognising, understanding, and reducing fatigue

Meet the team

COMbAT Fatigue is co-led by Dr Grace Turner and Professor Jonathan Mant.

Grace is an Associate Professor in the Centre for Patient Reported Outcomes Research at the University of Birmingham. She is an expert in stroke and patient and public involvement. She is the overall lead for the project.

Grace says, "Many people describe fatigue as the most difficult and upsetting problem caused by their stroke. We want to empower stroke survivors to manage their fatigue, enabling them to engage in activities that bring joy, value and meaning to their lives."

Jonathan is a Public Health Physician and Professor of Primary Care Research at the University of Cambridge, where he leads the Cardiovascular Research Group. Jonathan supports Grace in leading the project.

Jonathan says, "In the past, research was dominated by what professionals thought was important for people with stroke. Fatigue is something that stroke survivors have brought to the fore as something that needs to be addressed and we hope that our work will enable people with stroke and their loved ones to better manage fatigue."

The rest of the COMbAT Fatigue team consist of:

  • Brin Helliwell, a stroke survivor who has first-hand experience of post-stroke fatigue and is an expert in the design and delivery of stroke research. Brin leads on the co-design of the new version of FACETS and works with Steven and Mohammed on patient, carer and public involvement, supporting others with lived experience of stroke to contribute to COMbAT Fatigue.
  • Dr Steven Blackburn, Associate Professor in the Institute of Applied Health Research at the University of Birmingham. Steven works with Mohammed and Brin on patient, carer and public involvement in COMbAT Fatigue.
  • Dr Mohammed Shaikh, Equality, Diversity and Inclusion (EDI) Lead for the West Midlands Clinical Research Network. Mohammed leads on EDI aspects of the project and works with Brin and Steven on patient, carer and public involvement.
  • Sheila Greenfield, Professor of Medical Sociology in the Institute of Applied Health Research at the University of Birmingham. Sheila leads on the initial focus group and interview work for the project.
  • Huseyin Dogan, Professor in Human-Computer Interaction at the Bournemouth University. Huseyin co-leads the co-production of the new self-management programme and test its usability.
  • Dr Sarah Thomas, Deputy Director of Bournemouth University Clinical Research Unit. Sarah led on the development of the original version of FACETS and works with Huseyin to lead the co-production of the new self-management programme and test its usability.
  • Colin Greaves, Professor of Psychology Applied to Health at the University of Birmingham. Colin is responsible for leading or co-leading several aspects of the project, including ensuring that the new self-management programme can be delivered within existing NHS stroke services.
  • Dr Kelly Handley, Senior Medical Statistician in the Institute of Applied Health Research at the University of Birmingham. Kelly oversees the statistics involved in the clinical trial.
  • Sue Jowett, Professor of Health Economics in the Institute of Applied Health Research at the University of Birmingham. Sue oversees the health economics aspects of the project.
  • Sarah Tearne, Trials Management Team Leader in the Institute of Applied Health Research at the University of Birmingham. Sarah oversees the day-to-day running of the clinical trial.
  • Daisy Allington, Chief Operating Officer and co-founder of health technology start-up Cognitant. The Cognitant team will develop the self-management programme for the web.
  • Several clinicians who use their expertise in stroke to support the project: Dr Phil Ferdinand, Consultant Stroke Physician at Royal Stoke University Hospital, Rachael Jones, Senior Advanced Nurse Practitioner for Stroke at the Royal Wolverhampton NHS Trust, and Dr Katy Kyprianou, General Practitioner at Lion Health.

The team are also supported by multiple members of staff including a Programme Manager, IT team, and research fellows.