Department of Psychology, St. Jude Children's Research Hospital, Memphis, TN, USA.
Department of Psychology, St. Louis Children's Hospital, St. Louis, MO, USA.
Psychooncology. 2018 Apr;27(4):1193-1199. doi: 10.1002/pon.4646. Epub 2018 Feb 20.
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.
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.
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.
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.
调查新诊断为癌症的青少年患者及其家长对不孕风险（相对于肿瘤医生的风险评级）的理解，并确定与报告/估计不准确相关的背景因素。
男性患者（N=137；年龄 13-21 岁）及其家长完成了自我报告问卷。那些报告与提供者进行了与生育力相关的对话的患者（N=102 名青少年，N=74 名家长）报告了他们的不孕风险（即，医生沟通的内容），所有参与者都估计了风险（即，个人信念）。将报告/估计与肿瘤医生的评级进行比较，以评估相对准确性，并进行回归分析以评估潜在相关的背景因素。
参与者对其风险报告与肿瘤医生的评级一致性较差（青少年/家长的κ 值分别为 0.079/0.122），导致大多数青少年（59.8%）和家长（58.7%）不准确地报告风险。年龄较大的青少年不太可能过度报告风险（OR=0.69；95%CI，0.49-0.97），而儿子处于最高 Tanner 期的家长不太可能低估风险（OR=0.28；95%CI，0.08-0.92）。青少年（κ=0.040）和家长（κ=0.088）的风险估计与肿瘤医生的评级也不一致。因此，大多数青少年（63.7%）和家长（62.2%）的估计值不一致，尽管他们都报告了与提供者进行的生育力相关对话。
大多数青少年和家长不准确地报告了不孕风险，而且对风险的估计更差。需要进行研究以确定与准确理解癌症相关不孕风险相关的其他因素。应该为提供者提供易于使用的教育工具，以提高对不孕风险的认识。
