Priority 1 Stroke Rehabilitation and Long-term Care

UNCERTAINTY: How common are psychological problems and what impact do they have on the lives of people affected by stroke (including the children of stroke survivors); what factors and interventions can best prevent psychological difficulties, support adjustment, and improve motivation, well-being and engagement; how cost-effective are these interventions and how can they be made available to people affected by stroke?  (JLA PSP Priority 1)
Overall ranking 1
JLA question ID 0106/1b
Explanatory note

People affected by stroke can experience a range of changes to their mood and emotions over a long time following. As many as a third of stroke survivors may suffer from depression, and psychological problems are common amongst carers [Ref. 1].

There has been less research into these effects of stroke than the more visible, physical effects. This means that we know far less about these often ‘hidden’ consequences of stroke. Most of the research to-date has focussed on the early stages after stroke - up to 12 months, and in severe stroke. Not many studies have included stroke survivors who had their stroke more than one year ago, had TIA/minor stroke or follow-up over a long period of time. This means we don’t know much about these effects of stroke, prevention and rehabilitation long-term (i.e. beyond 12 months).

There are a number of up to date systematic reviews (see Evidence) and small trials/feasibility studies in some aspects covered by this area of uncertainty; however, evidence is often found to be low-certainty and further research is needed. Effective interventions must also be cost-effective and implementable for all people affected by stroke to get the support they need.

Ref 1: https://www.stroke.org.uk/research/helping-people-affected-stroke-self-manage-symptoms-anxiety-and-depression

Evidence

https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003689.pub4/full 
https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD011398.pub2/full 
https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD010442.pub2/full https://doi.org/10.1002/14651858.CD009286.pub3

Not a Cochrane review but was a systematic review focusing specifically on preventing and treating depression in people with aphasia.

https://www.tandfonline.com/doi/full/10.1080/09638288.2017.1315181

Health Research Classification System category Stroke
Extra information provided by this PSP
Original uncertainty examples What impact does gender have on the measure of caregiver burden of stroke survivors? ~ What is the effect on carer stress with early supported discharge? ~  Emotional impact of stroke on families and carers - including children. ~  What is the long term emotional impact of caring for stroke survivors on carers and what interventions might reduce the impact? ~  What is the impact on carer burden for family members after stroke? ~ What is the emotional impact of stroke long term on families and carers? ~ Neuro - psychological support to optimise  recovery. ~  What neuropsychological interventions can help to prevent the onset of clinical depression and anxiety, and improve psychological well-being, after stroke? ~ What  group based neuropsychological interventions are effective at improving psychological well-being after stroke? 
Submitted by Stroke Survivor x 108,Carer x 36, Health/social care professional x 126, Research Recommendations x 13, Not stated x  11
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