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

Clinical Snapshot

Key Findings

• P Value: Not reported — no inferential statistical testing performed

• Effect Size: Not applicable — descriptive cross-sectional survey; no comparative effect sizes calculated

• Primary Outcome: 52% of participants (26/50) reported being invited to donate tissue for research. Among those invited, 85% found information easy to understand, 92% had opportunity to ask questions, and 88% had sufficient time to consider the decision. 62% discussed the decision with family or friends; of those who did not, 70% would have liked to. Interest in a secure digital adjunct was reported by 94% of respondents (46/49).

• Nnt Or Sensitivity: Not applicable — experiential and preference data; no diagnostic, therapeutic, or prognostic metrics reported

• Confidence Interval: Not reported — descriptive statistics only; confidence intervals not provided for proportions

Clinical Application

The findings are directly actionable for clinical teams designing or reviewing tissue donation consent pathways. Recommendations around timing (avoiding the day of surgery), provision of revisitable information, structured question-asking opportunities, and family-inclusive resources are low-cost and implementable within existing clinical workflows. Development of a digital decision-support adjunct would require investment but is supported by strong patient preference data. In Australia, research tissue donation in neuro-oncology is governed by the National Health and Medical Research Council (NHMRC) National Statement on Ethical Conduct in Human Research and relevant state-based human research ethics committees. The Australian Brain Cancer Mission and institutions such as the Olivia Newton-John Cancer Research Institute and the Brain Tumour Research Centre of Excellence at QIMR Berghofer are active in this space. The RACGP and Cancer Australia do not currently publish specific guidelines on research tissue donation consent processes for rare brain tumours, representing a gap this study's findings could help address. Digital health tools for consent support would need to align with the Australian Digital Health Agency's frameworks and My Health Record infrastructure considerations. The TGA does not regulate consent processes directly, but the Therapeutic Goods Act and associated biobank regulations are relevant to tissue handling. The study's findings on family-inclusive decision-making resonate with Australian cultural values around shared decision-making, particularly for Aboriginal and Torres Strait Islander patients where community and family involvement in healthcare decisions is especially important. Adults with primary brain tumours (including gliomas, meningiomas, and other intracranial neoplasms) or spinal sarcomas who are approached for research tissue donation consent, particularly in tertiary neurosurgical and neuro-oncology settings

Abstract

PURPOSE: 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. METHODS: 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. RESULTS: 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%). CONCLUSION: 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.

References

1. 1.Mawhinney, G., Higham, H., Leedham, S., & Ansorge, O. (2026). Patient experiences of tissue donation and digital consent support in primary craniospinal tumour research. Supportive Care in Cancer: Official Journal of the Multinational Association of Supportive Care in Cancer. https://doi.org/10.1007/s11845-025-04082-4