A Qualitative Analysis of Parent–AYA Communication About Cancer Predisposition Diagnosed During Pediatric Cancer Care

BACKGROUND: Cancer-predisposing germline variants are increasingly identified and disclosed during pediatric oncology clinical care. To understand whether and how parents communicate about identified cancer predisposition syndromes (CPS) with their adolescent and young adult (AYA) children, this study qualitatively characterized the content and approach (e.g., timing) of parent-AYA communication about AYAs' CPS. PROCEDURE: AYAs with a CPS identified during clinical cancer care and their parents independently completed semi-structured interviews regarding their CPS-related communication. Interviews were completed 1.0-3.99 years following genetic test result disclosure and coded using inductive content analysis. RESULTS: Twenty-one AYAs (age 13-20 years) and 24 parents (17 mothers, 6 fathers, 1 grandmother) completed interviews. Although most parents reported repeatedly communicating with their child, several AYAs did not recall these conversations and nearly half described a one-time conversation. Parents described communicating to disclose genetic results, educate regarding cancer risk, attend to AYAs' emotions, and provide anticipatory guidance for future risk management. Parents whose AYA had a CPS conferring risk for adult-onset cancers (e.g., colon cancer) expected to continue to remind their AYA about cancer surveillance well into adulthood. Parents and AYAs described their CPS-related communication as "light," prompted by the AYAs' medical appointments and questions, and impacted by parents' understanding of the CPS. CONCLUSIONS: Our findings highlight areas for targeted genetic education and support. Parents may benefit from screening to ascertain their CPS understanding, education regarding AYAs' CPS-related information and emotional support needs, and support for transitioning AYAs to independently manage CPS-related health needs. TRIAL REGISTRATION: ClinicalTrials.gov identifier: NCT04848142.