Strategy-based cognitive rehabilitation with integrated fatigue management for patients with paediatric brain tumour: An acceptability and feasibility study

Research Question: Is a novel cognitive rehabilitation intervention for paediatric brain tumour (PBT) with integrated fatigue management feasible to implement and acceptable to service-users? Background: Medical treatments have greatly improved survival rates for PBT but the condition and treatment continue to be associated with significant cognitive morbidity. Nearly all survivors of PBT will experience some degree of chronic and progressive cognitive impairment (neurocognitive late effects ) that have a cascading impact on the development of intellectual and academic skills, quality of life, mental health, vocational attainment, and functional independence. Longstanding fatigue is also a highly prevalent and distressing symptom for survivors of PBT and further impacts engagement with therapeutic interventions and quality of life. Neurorehabilitation is recommended in national healthcare guidance and frequently requested by patients and families; however, this recommendation is rarely implemented due to a limited evidence base and poor feasibility and acceptability of trialled interventions. There are currently no therapeutic interventions for fatigue for PBT survivors, and it is likely that this common symptom impacts engagement and acceptability of neurorehabilitation. Aims & Objectives: We aim to establish feasibility, acceptability, and preliminary efficacy for strategy-based cognitive rehabilitation for PBT. The study will determine if there is benefit to feasibility and acceptability when fatigue management is integrated to determine the best intervention components to take forward to a larger scale, UK-wide randomised controlled trial (RCT). Methods: Thirty-six 7-17 years olds diagnosed with a brain tumour and/or receiving central nervous system-targeted oncology treatments will be recruited from the Neuropsychology Service at Great Ormond Street Hospital. Participants will be randomised to either 1) a 12-week cognitive rehabilitation intervention with integrated fatigue management, 2) a 6-week cognitive rehabilitation alone, or 3) standard care. The intervention includes group and individual sessions and webinars for schools. All participants will have received neuropsychological assessment identifying difficulties with cognition and fatigue. Feasibility (e.g., attrition, retention, adherence, and fidelity to intervention) will be assessed through the trial. Acceptability will be measured throughout using standardised questionnaire, satisfaction rating scales, and a post-study qualitative interview 3-months post-randomisation. Preliminary effectiveness data will be gathered pre- and post-intervention using standardised measures of fatigue, cognitive skills, quality of life, % school attendance, and goal-based outcomes. Timelines for delivery: The project will be delivered in 24 months. Study materials and measures will be completed by month 3, followed by an 18-month window to recruit and deliver the intervention to the entire sample and complete all follow-up measures and acceptability interviews. Analysis, study write-up, and dissemination will be carried out during months 21-24, including an RCT grant application. Anticipated impact and dissemination: The findings will be used to determine the appropriate rehabilitation intervention for a larger, multicentre RCT. Findings will be published in academic journals and shared at conferences, special interest groups, and with relevant healthcare services and commissioners. The findings will make a significant contribution to an area of substantial patient need where there is currently very limited evidence-base. A lay summary for service-users and charities will be co-produced with our Patient/Public Advisory Group.