BE SPeCiaL (Brain Tumours: Enhancing Supportive and Palliative Care in Patients and Loved Ones): Co Designing Future Support

Abstract

Background: Adults with primary malignant brain tumours (PMBTs) and their carers experience substantial functional, cognitive, and psychosocial challenges. Within Leeds, neuro oncology services see a diverse patient population, many of whom face socioeconomic disadvantage and barriers to accessing supportive care. Although evidence recommends early palliative care, activity enhancing programmes, and structured carer support, these approaches are not yet consistently embedded across Leeds Teaching Hospitals NHS Trust (LTHT) pathways.

Aims: The BE SPeCiaL project aims to co design, tailor, and implement supportive and palliative care interventions within Leeds neuro oncology services.

Methods: This non randomised implementation project. The planned interventions are: 1. Multidisciplinary activity enhancement and rehabilitation (physiotherapy, occupational therapy, speech and language therapy), 2. STEP (Supporting Timely Engagement with Palliative Care), including patient resources and a clinician handbook 3. A nurse guided internet based CBT intervention for carers.

Phase 1 evaluates current service provision in a control cohort (~75 patients; 68 carers) with assessments at baseline, 3, and 6 months, and uses implementation‑science–informed focus groups and interviews to tailor the three interventions.

Phase 2 delivers the flexible “choice menu” of the three interventions to an intervention cohort (~125 patients; 114 carers).

Phase 3 conducts comparative analyses of patient and carer outcomes, including instrumental activities of daily living, quality of life, unmet needs, mood, mastery, healthcare costs, and patient survival, using validated questionnaires, clinical records, and qualitative feedback. PPIE is embedded throughout all phases to ensure relevance and accessibility.

Results: Recruitment began in September 2025, with baseline data collection (62 participants- 31 patients,31 caregivers to date) and intervention tailoring ongoing. Findings will inform the integration of supportive and palliative care into Leeds neuro oncology pathways.

Conclusion: This project aims to create a sustainable, co designed model of supportive and palliative care that reduces inequalities, enhances patient and carer experience, and informs wider NHS adoption.