From Diagnosis To Donation: Lived Experiences, Consent, Ans Support Needs In Craniospinal Oncology Research

Poster Abstract: Gerard Mawhinney, Consultant Nurse  / DPhil Student. University of Oxford

Abstract

Purpose: Craniospinal tumours are rare, aggressive cancers that profoundly affect neurological function and quality of life. Tissue donation for research is essential for advancing treatments; however, consent is often sought during periods of acute emotional distress and clinical uncertainty, when patients may feel least equipped to decide. This study explores the journey from diagnosis to donation, aiming to inform ethical, person-centred research participation. A national, cross-sectional online survey—co-designed with patient advisors—was completed by 50 UK adults with primary brain tumours or spinal sarcomas. Recruitment occurred via advocacy groups, patient networks, and social media.

Methods: The survey combined quantitative and qualitative methods to examine diagnostic experiences, emotional responses to tissue donation requests, consent timing, communication clarity, family involvement, and attitudes toward an NHS-hosted dynamic digital consent portal. 

Conclusions: Among respondents (62% female; 36–75 years), only 52% recalled being asked to donate tissue; 24% found this stressful, citing poor timing and inadequate information. Most preferred donation discussions within specialist appointments rather than perioperatively. While two-thirds found consent information clear, over a third lacked opportunity for questions. Family discussions were limited (49%), though most who had not discussed donation wished they had. Digital literacy was high (96%), with 94% supporting a secure NHS digital consent portal offering tumour-specific information and interactive decision aids. Patients expressed strong willingness to contribute to research but highlighted the need for improved timing, clarity, and emotional support. A co-designed, flexible digital consent platform could enhance autonomy, communication, and ethical engagement—strengthening both patient experience and translational research impact.