Parent Quality of Life After Disclosure of Pediatric Oncology Germline Sequencing Results

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: At T2, parental distress significantly differed by their children's germline result type (positive, uncertain, negative; P = .038), parent relationship status (P = .04), predisclosure genetics knowledge (P = .006), and predisclosure worry about sequencing (P < .001). Specifically, parents of children with positive (ie, pathogenic or likely pathogenic) results experienced greater distress than those of children with negative results (P = .029), as did parents who were single, more knowledgeable about genetics, and with greater worry. In the adjusted regression model, a positive germline result remained significantly associated with parents' lower QoL at T2 follow-up (F [4,92] = 9.95; P < .001; R² = .30; β = .19; P = .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.