Parental perspectives on the use of tumor molecular profiling and germline genetic testing during their children's cancer treatment Journal Article


Authors: Sleiman, M. M.; Statman, M. R.; Yockel, M. R.; Wu, Y. P.; Hamilton, J. G.; Kohlmann, W. K.; Vagher, J.; Feola, S.; Maese, L. D.; Chen, J.
Article Title: Parental perspectives on the use of tumor molecular profiling and germline genetic testing during their children's cancer treatment
Abstract: Tumor molecular profiling (TMP) with germline genetic testing (GGT) is becoming standard practice in pediatric cancer care. Yet, little is known about parents' understanding of these practices, or testing’s psychosocial risks and benefits. This study characterized parental knowledge, attitudes, and beliefs about TMP and GGT. A cross-sectional, mixed-methods study was conducted among N = 75 parents of children with cancer. Parents completed a survey on cancer-related knowledge, attitudes toward GGT, psychological stress, communication, and decision-making. A subset (N = 31, 41%) then completed interviews about TMP and GGT that were content-coded and interpreted in light of survey findings. Correlative analyses indicated that parents' greater understanding of cancer and genetics was associated with favorable attitudes toward GGT (r = 0.34), preferences for more information about GGT results (r = 0.56) and reduced decisional regret about GGT (r = −0.61). Families who communicated less openly held more favorable views on GGT (r = −0.38) and preferred more information about GGT (r = −0.39), but had children who were more anxious (r = −0.36). Parents who were more anxious (r = 0.40) and who favored GGT (r = 0.41) also had children who were more anxious (all p's < 0.05). Thematically, most parents recalled their children's test results (94%), but recollection of testing type was suboptimal (58% for TMP, 61% for GGT). Nearly 70% believed it would be helpful to speak to other families for psychosocial support; additional potential resources included healthcare providers (31%) and websites (23%). When children with cancer undergo TMP and/or GGT, their parents would benefit psychoeducational resources to improve outcomes. © 2025 Elsevier B.V., All rights reserved.
Keywords: adolescent; adult; child; preschool child; child, preschool; middle aged; genetics; neoplasm; neoplasms; internet; psychology; attitude to health; cancer therapy; childhood cancer; questionnaire; health care personnel; psychosocial care; interview; interpersonal communication; cross-sectional study; cross-sectional studies; anxiety; health knowledge, attitudes, practice; children; decision making; genetic screening; therapy; germ-line mutation; genetic testing; mental stress; parents; parent; knowledge; psychosocial; content analysis; germline mutation; parental attitude; cancer; humans; human; male; female; article; surveys and questionnaires; parental behavior; malignant neoplasm; molecular fingerprinting
Journal Title: Familial Cancer
Volume: 24
Issue: 3
ISSN: 13899600
Publisher: Elsevier B.V.  
Date Published: 2025-01-01
Start Page: 63
Language: English
DOI: 10.1007/s10689-025-00488-2
PUBMED: 40788353
PROVIDER: scopus
DOI/URL:
Notes: Article -- Source: Scopus
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