A brain tumour can rob someone of the ability to find the right word, follow a conversation, or speak at all—yet the NHS has no standard care pathway for the speech and language therapy these patients need. This study tackles a neglected gap: while gliomas are the most common type of brain tumour and many patients now survive ten years or more, almost no research has systematically asked patients or clinicians what happens when speech and language break down. The team will interview adults living with gliomas who have communication difficulties, plus their family members and healthcare professionals, across three NHS Trusts. They will then co-develop recommendations for a dedicated speech and language therapy care pathway. If successful, the work could reshape how multidisciplinary brain tumour teams support communication—not as an afterthought, but as a core part of survivorship care. Better support means patients can access information, make decisions about their treatment, and maintain relationships. The findings will be shared through open-access papers, professional conferences, and patient-facing summaries via the Brain Tumour Charity and a podcast.
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Research questions What are the impacts of speech, language, and communication difficulties (SLCD) from the perspectives of adults living with glioma brain tumours? How do healthcare professionals view the support they provide to people living with brain tumours who have SLCD? Where and what are the unmet needs of people with gliomas and affected by SLCD, and what would be helpful in meeting those needs? Background Brain tumour incidence is growing; gliomas are the most common sub-type of brain tumour. SLCD are common in people with gliomas, but prevalence is likely underreported. Despite many people living for ten years or more post-diagnosis, there is sparse research exploring the impacts of SLCD for those affected; what is available shows SLCD adversely affect quality-of-life and ability to access information and support. Information is lacking on how best to provide support for those affected. Aims and objectives The ReSuLT-BT study aims to advance understanding of the impact of SLCD, and support needs, for people living with glioma brain tumours, identify ways to better support those affected by SLCD, and provide recommendations for an SLCD-focused care pathway to enhance multidisciplinary and SLT-directed care. Methods Stage 1: To explore experiences and impacts of SLCD, and support needs, semi-structured qualitative interviews will be conducted with adults (≥18 years) living with glioma brain tumours, and affected by SLCD, and nominated communication partners. Participants will be recruited from three UK NHS Trusts, using purposive sampling. Interview format will be flexible according to the communicative support needs of each participant. Interviews will be video recorded to capture non-verbal communication. Transcripts will be analysed using a framework approach. Focus groups with Speech & Language Therapists and brain tumour multidisciplinary team members will explore experiences and views on provision of support for SLCD. Data will be analysed using rapid qualitative techniques. Stage 2: Through an iterative series of three workshops, the research team will work with PPI representatives and SLTs to co-develop recommendations to improve SLCD support in brain tumour care pathways. Timelines for delivery Prior to start: Commence ethical/HRA approvals Months 1-4: Team training; finalise approvals and open sites; Steering Group, PPI and Clinical Advisory Group meetings Months 4-18: Stage 1 recruitment, data collection and analysis Months 16-21: Organisation and delivery of Stage 2 co-development workshops. Months 22-24: Completion of final report. Future planning PPI People affected by brain tumours have been involved in developing the application and will be actively involved in delivery, including reviewing patient-facing materials, advising and supporting recruitment, reviewing results and dissemination. Anticipated impact and dissemination Three open-access papers will be produced. We will share findings, and recommendations, at SLT, neuro-oncology, neurorehabilitation and cancer survivorship conferences, and through the Tessa Jowell Brain Tumour Mission and Brain Tumour Charity. We will also disseminate accessible summaries via platforms such as YouTube, media releases, and a Brain Tumour podcast. To reach health professionals in MDTs, we will develop and disseminate health professional briefings through Cancer Alliances/Integrated Care Boards, and the Council for Allied Health Professions Research.
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