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

Abstract

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 (i.e., what oncologist had communicated) and all participants estimated risk (i.e., personal belief). Reports/estimates were compared to 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 (kappa=.079/.122 for adolescents/parents), resulting in most adolescents (59.8%) and parents (58.7%) inaccurately reporting risk. Older adolescents were less likely to over-report risk (OR=0.69; 95%CI [0.49-0.97]) and parents of sons with the highest Tanner stage were less likely to under-report (OR=0.28; 95%CI [0.08-0.92]). Risk estimates were also in poor agreement with oncologists' ratings among adolescents (kappa=.040) and parents (kappa=.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.

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