Patient experiences of tissue donation and digital consent support in primary craniospinal tumour research

Requests for tissue donation for research are often made at times of heightened vulnerability, particularly around diagnosis and surgery. This study explored patient experiences of tissue donation discussions, perspectives on consent, and the acceptability of digital decision support in primary craniospinal tumour research.

A UK national online cross-sectional survey was conducted with 50 adults with a primary brain tumour or spinal sarcoma. The survey was developed with patient and public involvement; six patient contributors reviewed the initial questionnaire before launch. Descriptive statistics summarised closed responses, and open-text comments were grouped descriptively to contextualise quantitative findings. Reporting was informed by STROBE guidance.

Just over half of participants reported being invited to donate tissue for research (26/50, 52%). Respondents strongly preferred tissue donation to be discussed at or after a clinic appointment, and none selected the day of surgery as the preferred time. Among invited respondents, most reported that information was easy to understand (22/26, 85%), that they had an opportunity to ask questions (23/25, 92%), and that they had sufficient time to consider the decision (23/26, 88%). Sixteen of 26 invited respondents (62%) discussed the decision with family or friends; among invited respondents who had not done so, 7/10 (70%) would have liked the opportunity. Interest in a secure digital adjunct was high (46/49, 94%).

Overall experience was generally positive, but the data identify specific, practical opportunities to strengthen consent support in rare craniospinal tumour pathways, including appropriate timing, clear and revisitable information, opportunities for question-asking, and resources that support family-inclusive decision-making.