Priority 4 Stroke Rehabilitation and Long-term Care

UNCERTAINTY: How common is fatigue; what and why are there various types, causes/triggers and experiences of its effects? What are the best ways to recognise, reduce, treat and self-manage fatigue - including in young stroke survivors and for all types of stroke, including sub-arachnoid haemorrhage - to minimise the impact on recovery and life after stroke? (JLA PSP Priority 4)
Overall ranking	4
JLA question ID	0106/4b
Explanatory note	Fatigue is a major issue for stroke survivors, and many say that it’s the worst symptom they experience after their stroke. It can have a negative effect even on those who make a good physical recovery. It affects stroke survivors’ ability to engage with rehabilitation, quality of life (for example, through being too fatigued to take part in hobbies or spend time with friends and family), and is associated with increased mortality. The last 10-15 years has seen an increase in the amount of research being carried out into fatigue after stroke. However, progress in the understanding and management of fatigue has been slow and there’s very little evidence on how best to treat fatigue after stroke. The causes of post-stroke fatigue are not clearly understood, but there may be some contributing factors that, if changed, could lead to better understanding of, diagnosis and management of the problem, and improve the quality of life of stroke survivors.
Evidence	https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD007030.pub3/full (2015) Pharmacological and non-pharmacological treatments (e.g. fatigue education programme, mindfulness-based reduction programme and cognitive-behavioural therapy): Cochrane review, Nguyen et al. (2019) https://pubmed.ncbi.nlm.nih.gov/27703065/
Health Research Classification System category	Stroke

Extra information provided by this PSP
Original uncertainty examples	Why is fatigue such a problem? ~ Fatigue post stroke. ~ Need more research into fatigue in stroke. ~ I would like to see research about tiredness after a stroke ~ What is the current understanding of serious and persistent stroke fatigue? ~ What are the short and long term needs of patients who have subarachnoid haemorrhage? ~ I had a left thalamic Intracerebral haemorrhage in June 2019. I am still feeling extremely lethargic and at times a bit giddy/dizzy. ~ What is the cause of disability after SAH (e.g. early brain injury, delayed cerebral ischaemia, corticalspreading depolarisation, microthrombosis, haemoglobin, oxidative stress, inflammation)?
Submitted by	Stroke Survivor x 64, Carer x 7, Health/social care professional x 44, Research Recommendations x 1, Not stated x 5

Extra information provided by this PSP

Original uncertainty examples

Why is fatigue such a problem? ~ Fatigue post stroke. ~ Need more research into fatigue in stroke. ~ I would like to see research about tiredness after a stroke ~ What is the current understanding of serious and persistent stroke fatigue? ~ What are the short and long term needs of patients who have subarachnoid haemorrhage? ~ I had a left thalamic Intracerebral haemorrhage in June 2019. I am still feeling extremely lethargic and at times a bit giddy/dizzy. ~ What is the cause of disability after SAH (e.g. early brain injury, delayed cerebral ischaemia, corticalspreading depolarisation, microthrombosis, haemoglobin, oxidative stress, inflammation)?

Submitted by

Stroke Survivor x 64, Carer x 7, Health/social care professional x 44, Research Recommendations x 1, Not stated x 5

PSP information
PSP unique ID	0106
PSP name	Stroke Rehabilitation and Long-term Care
Total number of uncertainties identified by this PSP.	93 (To see a full list of all uncertainties identified, please see the detailed spreadsheet held on the JLA website)
Date of priority setting workshop	19/20th April 2021