Parent Quality of Life After Disclosure of Pediatric Oncology Germline Sequencing Results
Katianne M. Howard Sharp, Chen Li, Zhaohua Lu, M. Clark, Niki Jurbergs, Annastasia Ouma, Lynn Harrison, Elsie L. Gerhardt, Leslie M. Taylor, Kayla V. Hamilton, Rose B. McGee, Regina Nuccio, Stacy J. Hines‐Dowell, Jami S. Gattuso, Michelle Pritchard, Belinda N. Mandrell, Kenneth P. Tercyak, Kim E. Nichols, Liza‐Marie Johnson
Abstract
PURPOSE: To characterize parents' quality of life (QoL) after germline genomic sequencing for their children with cancer. METHODS: Participants were n = 104 parents of children with cancer enrolled in a prospective study of clinical tumor and germline genomic sequencing. Parents completed surveys at study consent (T0), before disclosure of their child's germline results (T1), and again ≥5 weeks after results disclosure (T2). Bivariate associations with QoL were examined, followed by a multivariable regression model predicting parents' psychological distress. RESULTS: = .031). CONCLUSION: Germline genomic sequencing for children with cancer is associated with distress among parents when revealing an underlying cancer predisposition among their affected children. Genetic education and counseling before and after germline sequencing may help attenuate this impact on QoL by addressing parents' concerns about test results and their health implications. Assessing parents' worry early in the testing process may also aid in identifying those most likely in need of psychosocial support.