Evidence map›Paper›PMID 41947019›Full record

ArticlePsycho-oncology2026

Adolescents' Experiences With Sequencing for Genetic Predisposition in Pediatric Cancer: A Quantitative Study.

S B B Bon, R H P Wouters, J J Bakhuizen, M M van den Heuvel-Eibrink, H Maurice-Stam, M C J Jongmans, M A Grootenhuis

Abstract read
In one paragraph

Article in Psycho-oncology, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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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

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3 · Its place in the literature

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0 citing papers in PubMed.

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4 · The record

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5 · Who and what money

Authors and funding

7 authors.

S B B BonPrincess Máxima Center for Pediatric Oncology, Utrecht, the Netherlands.ORCID https://orcid.org/0000-0003-2798-6001
R H P WoutersPrincess Máxima Center for Pediatric Oncology, Utrecht, the Netherlands.
J J BakhuizenPrincess Máxima Center for Pediatric Oncology, Utrecht, the Netherlands.
M M van den Heuvel-EibrinkPrincess Máxima Center for Pediatric Oncology, Utrecht, the Netherlands.
H Maurice-StamPrincess Máxima Center for Pediatric Oncology, Utrecht, the Netherlands.
M C J JongmansPrincess Máxima Center for Pediatric Oncology, Utrecht, the Netherlands.
M A GrootenhuisPrincess Máxima Center for Pediatric Oncology, Utrecht, the Netherlands.

Funding

Stichting Kinderen Kankervrij 403
6 · The paper itself

Abstract

backgroundGermline sequencing is increasingly integrated into pediatric oncology, yet data on adolescents' experiences with genetic testing remain limited.

aimsTo explore adolescents' knowledge, expectations, hopes, worries, satisfaction, and regret related to germline sequencing in the context of pediatric cancer.

methodsAdolescents with cancer (aged 12-18 years) who underwent cancer predisposition gene panel sequencing (143 genes) completed questionnaires at two time points: after providing consent and after receiving results. The questionnaires assessed genetics knowledge, expectations, hopes, worries, satisfaction, and decisional regret.

resultsOf 109 eligible adolescents, 46 completed the first measurement, and 38 completed the second. Before disclosure of results, participants on average answered 49% of the genetics knowledge statements correctly. Nearly all hoped their participation would benefit future patients, and many expressed personal hopes, such as understanding why they developed cancer and whether their future offspring might be at risk. Worries were common, with fear of cancer recurrence being the most frequently reported concern, followed by concerns about risks to future offspring. Adolescents who received a negative test result (36 out of 38 of our sample), reported high satisfaction with study participation and low levels of regret.

conclusionsAdolescents with cancer generally report positive experiences with germline sequencing, despite limited genetics knowledge and prevalent worries. Adolescents are not only concerned about their own health, but also about the health of family members, future offspring, and potential future patients.

Indexed as

Genetic Predisposition to DiseaseGenetic TestingHealth Knowledge, Attitudes, PracticeNeoplasmsAdolescentAnxietyChildEmotionsFemaleGerm-Line MutationHumansMaleReturn of Individual Research ResultsSurveys and Questionnairesadolescentscancercancer predispositiongenetic counselingoncologypediatric oncologypsycho‐oncology

Identifiers

PMID41947019
PMCPMC13057058

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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.