Parental concerns about hereditary risk in adolescent and young adult cancer survivors

Background: Adolescent and young adult cancer survivors (AYAs; diagnosed between ages 15-39) report worries regarding the health of their children, particularly regarding their chance of developing cancer. This study describes the frequency of reproductive health concerns among ethnically diverse survivors of AYA cancer and examines how genetic counseling impacts these concerns. Methods: AYAs between 18-39 years at diagnosis were recruited from two NCI-designated comprehensive cancer centers and a safety-net hospital. Concerns regarding the health of future children were evaluated using the three-item Child's Health Subscale (CHS), a subset of the Reproductive Concerns after Cancer Scale. Receipt of genetic counseling was self-reported. Descriptive statistics and mean overall score comparisons were examined, stratified by ethnicity and receipt of counseling. Results: The sample included 58 AYAs (48% Hispanic, 79% female) diagnosed at a mean age of 36 years (SD=5). The most common cancer types were breast (22%) and brain/spinal cord (19%). Additional cancer types included in our sample were cervical, uterine, ovarian, Hodgkin lymphoma, non-Hodgkin lymphoma, colorectal, melanoma, sarcoma, and ovarian. Overall, 56% (n=32) of AYAs reported they did not receive any form of counseling. AYAs had a mean CHS score of 2.11 (SD=0.8; range 1-3, where higher scores reflect greater concern), indicating moderate concern about their future child's health. Mean CHS scores did not differ significantly for those who had received counseling versus those who had not (2.3 [SD=.7] vs 2.1 [SD=.9], p=.2, respectively). No significant differences were found between mean overall CHS scores and ethnicity. Conclusion: In this study, AYAs expressed moderate concerns about their future child's health regardless of whether they received genetic counseling, suggesting that current counseling practices may not fully address the factors driving these concerns. Moreover, high concern levels among AYAs who did not receive counseling (presumably those not identified as having an indication for it) highlight potential gaps in how risk information and reassurance are conveyed within survivorship care. These findings indicate the need to strengthen reproductive health and genetic risk discussions across the survivorship continuum, ensuring both indicated and non-indicated survivors receive appropriate guidance, reassurance, and support.