Previous quantitative studies focused on either survivors’ self-reports of pregnancies/fertility 24- 27 or biomarkers of gonadal functioning (eg, hormone levels, semen analysis) 28- 35 but have not considered survivors’ own fertility-related perceptions. 15, 20, 21 Survivors may also be told that their fertility is impaired or that test results were ambiguous, which potentially causes uncertainty and leads to a reliance on personal beliefs. Qualitative studies indicated that some survivors remain anxious about infertility despite being informed by providers that they should be fertile, whereas others remain hopeful when they are infertile. Importantly, survivors’ beliefs about their fertility do not necessarily align with their actual fertility status. 8, 13 For example, difficulties establishing romantic relationships, 14- 18 fertility-related concerns/uncertainty, 11, 14- 16, 19- 22 and emotional distress 23 have been reported among survivors who desire but are unable to have biological children. 7 Yet, many survivors are unaware of their fertility status, 8- 12 and impaired fertility or infertility can result in unexpected challenges after treatment. 6 Infertility rates range from 42% to 66% among male childhood cancer survivors and from 11% to 26% among female childhood cancer survivors higher rates occur among those who received alkylating agents and/or pelvic radiation. 4, 5 Endocrine impairments, including fertility problems, are among the most prevalent medical late effects of childhood cancer treatment. 2, 3 Yet, cure comes at a cost, as 73% to 93% of survivors are diagnosed with one or more chronic health conditions by 30 years after cancer diagnosis. More than 15,000 children are diagnosed with cancer in the United States every year, 1 and more than 80% survive long term into adulthood. Factors related to discordance included sociodemographics, gonadotoxic treatments, fertility concerns, and sexual dysfunction (all P <.
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Most survivors with discordant perceptions overestimated risk (ie, perceived being at risk, though fertility status seemed normal 19.7% of male and 43.6% of female survivors), whereas a minority underestimated risk (ie, perceived no risk but were impaired/infertile 16.3% of male and 5.3% of female survivors). Laboratory-evaluated impaired gonadal function was found in 24.3% of female and 55.6% of male survivors, but concordance with survivors’ risk perceptions was low (Cohen’s κ <. Most childhood cancer survivors (61.9%) perceived themselves at increased risk for infertility, which was significantly associated with sociodemographic factors (older age, white ethnicity, being married/partnered, higher education), gonadotoxic treatments, fertility concerns, previous unsuccessful attempts to conceive, and sexual dysfunction (all P <.