%0 Journal Article
%T Parents' and patients' perspectives, experiences, and preferences for germline genetic or genomic testing of children with cancer: A systematic review.
%A Hunter JD
%A Hetherington K
%A Courtney E
%A Christensen Y
%A Fuentes-Bolanos N
%A Bhatia K
%A Peate M
%J Genet Med
%V 26
%N 9
%D 2024 Sep 25
%M 38943478
%F 8.864
%R 10.1016/j.gim.2024.101197
%X OBJECTIVE: Germline testing in pediatric cancer presents opportunities and challenges. Understanding family perspectives, experiences, and preferences will optimize integration into routine care.
METHODS: Following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, we searched 4 databases for studies exploring perspectives, experiences, and preferences of parents/caregivers and/or patients regarding germline testing of children with cancer. Qualitative and quantitative data were extracted, organized, and summarized by research question and themes.
RESULTS: We identified 2286 unique articles, of which 24 were included. Interest in and uptake of testing was high. Families were motivated by altruism and a desire for inheritance/causation information. Testing barriers included psychological concerns, timing of the testing approach if offered at diagnosis or in a high-risk cancer setting and privacy/discrimination. Testing experiences highlighted challenges yet also positive impacts, with results providing psychological relief and informing proactive decision making. Timing preferences varied; however, allowing time to adjust to a new diagnosis was a common theme. Most wanted to receive as many germline sequencing-related results as possible.
CONCLUSIONS: Findings underscore the importance of integrating germline analyses into pediatric cancer care with flexibility and support for families facing challenges. Where possible, consent should be provided at a time that suits each family's situation with access to information aligning with their needs and preferences.
UNASSIGNED: CRD42023444890.