Evidence map›Paper›PMID 41213095›Full record

ArticleJCO oncology practice2026

"It's My Wish, We Need This Program": Qualitative Reflections From People With High-Grade Brain Cancer Consenting to Postmortem Brain Donation.

Cassandra P Griffin, Melissa A Carlson, Marjorie M Walker, James Lynam, Christine L Paul

Abstract read
In one paragraph

Article in JCO oncology practice, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed, 1 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

2 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. 'A No-Brainer, but Not a Simple Decision': A Qualitative Study of Patient Experiences of Tissue Donation for Research in Rare Craniospinal Tumour Pathways.Health expectations : an international journal of public participation in health care and health policy · 2026
    Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

5 authors.

Cassandra P GriffinSchool of Public Health and Medicine, University of Newcastle, Newcastle, NSW, Australia.ORCID 0000-0003-4107-0921
Melissa A CarlsonSchool of Public Health and Medicine, University of Newcastle, Newcastle, NSW, Australia.
Marjorie M WalkerSchool of Public Health and Medicine, University of Newcastle, Newcastle, NSW, Australia.
James LynamSchool of Public Health and Medicine, University of Newcastle, Newcastle, NSW, Australia.ORCID 0000-0002-6742-820X
Christine L PaulSchool of Public Health and Medicine, University of Newcastle, Newcastle, NSW, Australia.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

purposeBrain tissue donated in the postmortem setting is a driving resource for brain cancer research and a source of hope in the face of dismal survival rates. As demand for tissue increases, the need to understand the impact of these programs on prospective donors becomes paramount. Little is known about the experience of consenting to rapid autopsy after a terminal brain cancer diagnosis, and clinical teams favor caution when approaching patients for consent for fear of causing distress. Characterizing the human experience of consenting to postmortem brain donation will provide an evidence base for compassionate integration of brain donation consent into clinical pathways.

methodsWe interviewed 21 prospective donors who had expressed interest or had consented to postmortem brain donation. A thematic analysis with narrative synthesis was conducted on the transcripts of the qualitative interviews.

resultsFour themes were identified within the data: (1) Meaning, purpose, and donor expectations, (2) embracing the identity of a donor and integrating donation into personal narrative; (3) regaining control and defining legacy; and (4) the role of stoicism and humor in protecting emotional well-being and family relationships during donor discussions.

conclusionThe sentiments expressed in the data indicate an overwhelmingly positive impact associated with consenting to brain donation. Consenting to a postmortem brain donation program can instill a sense of purpose and meaning while restoring a sense of control for those facing mortality. These data indicate that the prevailing caution and reluctance in consenting a patient to brain donation may be misplaced, preventing patients and their families from engaging with a program that can provide an invaluable source of hope, empowerment, and legacy.

Indexed as

BrainBrain NeoplasmsInformed ConsentTissue and Organ ProcurementTissue DonorsAdultAgedAutopsyFemaleHumansMaleMiddle AgedNeoplasm GradingProspective StudiesQualitative Research

Identifiers

PMID41213095
PMCPMC13592821

What Socratic holds

Textmetadata
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the Socratic graph.