Accurate understanding of infertility risk among families of adolescent males newly diagnosed with cancer

Objective: To examine patient and parent understanding of infertility risk (relative to oncologists' risk ratings) among adolescents newly diagnosed with cancer, and to identify background factors related to inaccurate reporting/estimating. Methods: Male patients (N = 137; aged 13-21) and their parents completed self-report questionnaires. Those who reported a fertility-related conversation with their provider (N = 102 adolescents, N = 74 parents) reported their infertility risk (ie, what oncologist had communicated) and all participants' estimated risk (ie, personal belief). Reports/estimates were compared with oncologists' ratings to assess relative accuracy, and regression analyses assessed potentially related background factors. Results: Participants' agreement of their risk reports with the oncologist was poor (κ =.079/.122 for adolescents/parents), resulting in most adolescents (59.8%) and parents (58.7%) inaccurately reporting risk. Older adolescents were less likely to overreport risk (OR = 0.69; 95% CI, 0.49-0.97) and parents of sons with the highest Tanner stage were less likely to underreport (OR = 0.28; 95% CI, 0.08-0.92). Risk estimates were also in poor agreement with oncologists' ratings among adolescents (κ =.040) and parents (κ =.088). Accordingly, incongruent estimates occurred in most adolescents (63.7%) and parents (62.2%), although all reported fertility-related conversations with their providers. Conclusions: Most adolescents and parents inaccurately reported infertility risk, and more poorly estimated risk. Research is needed to identify additional factors associated with accurate understanding of cancer-related infertility risk. Providers should be supported with user-friendly educational tools to promote awareness of infertility risk.