Half of all stroke survivors say fatigue is their worst symptom, yet most receive no help managing it. This matters because post-stroke fatigue is not simply tiredness—it is a persistent, debilitating exhaustion that can derail recovery and daily life. Existing evidence for fatigue treatments after stroke is thin. The researchers are adapting an established programme called FACETS, originally developed for multiple sclerosis, into a web-based self-management tool for stroke and TIA survivors. Over five years, the team will co-produce the intervention with survivors, carers, and clinicians, then test its usability, feasibility, and effectiveness through a randomised controlled trial with health economic analysis. If successful, the programme could give thousands of stroke survivors a practical, scalable way to manage fatigue without requiring repeated clinic visits. The web-based format also means it could reach people who struggle to access face-to-face services, including those from underserved groups. The research will produce both the intervention itself and evidence on whether it is cost-effective enough for NHS adoption.
View original technical description
Background Post-stroke fatigue is common and debilitating. Around 50% of stroke and transient ischaemic attack (TIA) survivors experience fatigue and many report it to be their worst symptom. However, most stroke survivors receive no information, advice or support to manage fatigue. Evidence of efficacy for interventions for post-stroke fatigue is lacking. Improving management of post-stroke fatigue is a high-priority research area. Fatigue self-management programmes are effective in other long-term conditions. Rather than re-invent the wheel , we identified an established, evidence-based fatigue intervention (developed for multiple sclerosis) to use as a starting point: FACETS (Fatigue: Applying Cognitive behavioural and Energy effectiveness Techniques to LifeStyle). Aims/Objectives Aim: Co-produce and evaluate the effectiveness of a self-management programme for post-stroke fatigue. Objectives: Explore context-specific behavioural and accessibility needs; constraints/facilitators; and implementation requirements to adapt FACETS for stroke/TIA population and web-based delivery. Identify behaviour change targets, behaviour change processes and behaviour change techniques to facilitate fatigue self-management. Develop and refine implementation strategies. Work with stroke/TIA survivors, family/caregivers and stakeholders to co-produce a self-management intervention for post-stroke fatigue. Test usability of the intervention. Assess the feasibility/acceptability of the intervention. Evaluate effectiveness and cost effectiveness of the intervention. Disseminate research outputs, develop plans for knowledge mobilisation. Methods WP-1: Focus groups (supplemented with one-to-one interviews) with stroke/TIA survivors, family/caregivers, healthcare professionals and commissioners. WP-2: Intervention co-production with stroke/TIA survivors, family/caregivers and stakeholders, guided by a rapid design process model: the Double-Diamond model. WP-3: Supervised and unsupervised usability testing, using the think-aloud protocol, System Usability Scale, NASA Task Load Index and semi-structured interviews. WP-4: Mixed-methods, multicentre, single-arm feasibility study. WP-5: Multicentre randomised controlled trial (RCT), 1:1 randomisation, with internal pilot, health economic evaluation and mixed-methods process evaluation. WP-6: Dissemination and knowledge mobilisation. Cross-cutting theme – Equality, Diversity and Inclusion (EDI): We will ensure underserved groups are represented in our research through effective Patient, Carer, Public Involvement and Engagement (PCPIE), co-production and co-designed study processes/recruitment. Cross-cutting theme – Implementation: An implementation strategy will be developed in WPs1-2 and refined in WPs4-5, informed by the (adapted) Expert Recommendations for Implementing Change framework. Patient, Carer & Public Involvement & Engagement (PCPIE) A diverse PCPIE group informed the preference for a web-based, self-management fatigue programme and research design for all work packages. PCPIE will be led by our public co-applicant and academic PCPIE-lead. Planned PCPIE includes: co-design research methods and study materials; interpret findings from a patient perspective; co-create dissemination resources, and attend study oversight groups. Timelines for delivery This is a 5-year programme. The first year will be dedicated to intervention co-production (WPs1-2), followed by usability testing (WP-3) and feasibility study (WP-4) in year 2 and RCT (WP-5) in years 3-5. Dedicated time in year 5 is protected for dissemination/knowledge mobilisation (WP-6). Anticipated Impact and Dissemination Overall, the research will produce a self-management programme for post-stroke fatigue, optimised for widespread implementation, and establish evidence of effectiveness and cost-effectiveness. Outputs will include: Peer-reviewed journal publications; Press releases; Conferenc
Plain English summaries and category classifications on this site are generated by AI and may not perfectly reflect the original research.
Is something wrong? Let us know