Evidence map›Paper›PMID 34458732›Full record

ArticleNeuro-oncology advances

Parents' experiences of postmortem tumor donation for high-grade gliomas: benefits and suggested improvements.

Eden G Robertson, Claire E Wakefield, Maria Tsoli, Stewart J Kellie, Frank Alvaro, Andrew J Gifford, Martin A Weber, Michael Rodriguez, Maria Kirby, David S Ziegler

Abstract read
In one paragraph

Article in Neuro-oncology advances. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
6citing papers in PubMed, 2 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

6 citing papers in PubMed, 2 syntheses or guidelines pooled it.

  1. Pooled it
  2. Pooled it
  3. Article
  4. '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
  5. Brain stem tumors in children less than 3 months: Clinical and radiologic findings of a rare disease.Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery · 2024
    Article
  6. 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

10 authors.

Eden G RobertsonSchool of Women's and Children's Health, Faculty of Medicine, UNSW Sydney, Sydney, New South Wales, Australia.ORCID https://orcid.org/0000-0001-9395-7896
Claire E WakefieldSchool of Women's and Children's Health, Faculty of Medicine, UNSW Sydney, Sydney, New South Wales, Australia.
Maria TsoliSchool of Women's and Children's Health, Faculty of Medicine, UNSW Sydney, Sydney, New South Wales, Australia.
Stewart J KellieChildren's Cancer Centre, The Children's Hospital at Westmead, Sydney, New South Wales, Australia.
Frank AlvaroChildren's Cancer and Blood Disorders, John Hunter Children's Hospital, Newcastle, New South Wales, Australia.
Andrew J GiffordSchool of Women's and Children's Health, Faculty of Medicine, UNSW Sydney, Sydney, New South Wales, Australia.
Martin A WeberAnatomical Pathology, NSW Health Pathology East (Prince of Wales Hospital), Sydney, New South Wales, Australia.
Michael RodriguezAnatomical Pathology, NSW Health Pathology East (Prince of Wales Hospital), Sydney, New South Wales, Australia.
Maria KirbyDepartment of Haematology and Oncology, Women's and Children's Hospital, Adelaide, South Australia, Australia.
David S ZieglerSchool of Women's and Children's Health, Faculty of Medicine, UNSW Sydney, Sydney, New South Wales, Australia.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundPediatric high-grade glioma is a devastating diagnosis. There has been no improvement in outcomes for several decades, with few children surviving 2 years postdiagnosis. Research progress has been hampered by a lack of tumor samples, which can be used to develop and test novel therapies. Postmortem tumor donations are therefore a valuable opportunity to collect tissue. In this study, we explored Australian parents' experiences of donating their child's tumor for research after their child had died.

methodsWe collected qualitative data from 11 bereaved parents who consented to donate samples of their child's high-grade glioma for research postmortem. We asked parents about their perceived benefits/burdens of the autopsy, recommendations for improving consent discussions, and decision regret.

resultsParents hoped that their donation would help to find a cure for future children with high-grade glioma. They described feeling comforted knowing that their child's suffering may help others. Some parents also felt that the donation would help them better understand their child's tumor. Although some parents described discomfort about procedures leading up to the autopsy, parents reported minimal regret regarding their decision to donate their child's tumor. Parents provided recommendations to improve consent discussions, such as providing more information about the autopsy logistics and why the donation was needed.

conclusionParents consented to autopsy for altruistic reasons, although donation may also assist parents in their grieving. There is a strong need to improve access to tumor donations for any family who wishes to donate.

Indexed as

childhood cancerDIPGgliomaqualitativetumor donation

Identifiers

PMID34458732
PMCPMC8386242

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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 OpenQuestion graph.