Evidence map›Paper›PMID 38767058›Full record

ArticleGenetics in medicine : official journal of the American College of Medical Genetics2024

Genomic sequencing research in pediatric cancer care: Decision making, attitudes, and perceived utility among adolescents and young adults and their parents.

Amanda M Gutierrez, Jill O Robinson, Hadley S Smith, Lauren R Desrosiers-Battu, Sarah R Scollon, Isabel Canfield, Rebecca L Hsu, Nicole M Schneider, D Williams Parsons, Sharon E Plon and 4 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–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

1 citing paper in PubMed.

  1. 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

14 authors.

Amanda M GutierrezCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX. Electronic address: ag3@bcm.edu.
Jill O RobinsonCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX.
Hadley S SmithCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX; Precision Medicine Translational Research (PROMoTeR) Center, Department of Population Medicine, Harvard Medical School and Harvard Pilgrim Health Care Institute, Boston, MA.
Lauren R Desrosiers-BattuDepartment of Pediatrics, Baylor College of Medicine, Houston, TX; Texas Children's Cancer Center, Texas Children's Hospital, Houston, TX.
Sarah R ScollonDepartment of Pediatrics, Baylor College of Medicine, Houston, TX; Texas Children's Cancer Center, Texas Children's Hospital, Houston, TX.
Isabel CanfieldCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX.
Rebecca L HsuCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX.
Nicole M SchneiderDepartment of Pediatrics, Baylor College of Medicine, Houston, TX.
D Williams ParsonsDepartment of Pediatrics, Baylor College of Medicine, Houston, TX; Texas Children's Cancer Center, Texas Children's Hospital, Houston, TX.
Sharon E PlonDepartment of Pediatrics, Baylor College of Medicine, Houston, TX; Texas Children's Cancer Center, Texas Children's Hospital, Houston, TX.
Wendy Allen-RhoadesDepartment of Pediatric and Adolescent Medicine, Mayo Clinic, Rochester, MN.
Mary A MajumderCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX.
Janet MalekCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX.
Amy L McGuireCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX.

Funding

Measuring Perceptions of Utility of Clinical Genome Sequencing: Instrument Testing and ValidationU01HG006485 · NHGRI · BAYLOR COLLEGE OF MEDICINE · PI MCGUIRE, AMY L, PARSONS, DONALD W. · 2012 to 2021
$22.1M
NHGRI NIH HHS U01 HG006485
6 · The paper itself

Abstract

purposeProfessional guidelines recommend engaging adolescents and young adults (AYAs) in medical decision making (DM), including whether to undergo genomic sequencing (GS). We explored DM around GS and attitudes after return of GS results among a diverse group of AYAs with cancer and their parents.

methodsWe surveyed AYAs with cancer (n = 75) and their parents (n = 52) 6 months after receiving GS results through the Texas KidsCanSeq study. We analyzed AYAs' DM role in GS research enrollment and their satisfaction with that role. We compared AYAs' and parents' self-reported understanding of, attitudes toward, and perceived utility of the AYA's GS results.

resultsMost AYAs reported equally sharing DM with their parents (55%) or leading DM (36%) about GS research. Compared with their cancer care DM role, 56% of AYAs reported the same level of involvement in GS research DM, whereas 32% were more involved, and 13% were less involved (P = .011). AYAs were satisfied (99%) with their DM role regarding GS study participation. AYAs and parents had similar self-reported understanding of, attitudes toward, and perceived utility of the GS results.

conclusionOur results support engaging AYAs in DM about GS research and provide insights into AYAs' DM preferences and positive attitudes toward GS.

Indexed as

Decision MakingNeoplasmsParentsAdolescentAdultFemaleGenetic TestingGenomicsHealth Knowledge, Attitudes, PracticeHumansMaleSurveys and QuestionnairesYoung AdultAdolescents and young adults with cancerAttitudesDecision makingGenomic sequencingPerceived utility

Identifiers

PMID38767058
PMCPMC11534009

What OpenQuestion holds

Textmetadata
LicenceTDM
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Registered trials

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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.