Parent–Child Concordance About Fertility Perspectives in Adolescent Males Newly Diagnosed With Cancer

• In Event: Physical and mental health across the lifecourse

Abstract

Background: Approximately half of male childhood cancer survivors experience impaired fertility, which can affect psychosexual development and cause distress (Ellis et al., 2016). Fertility preservation (FP) remains underutilized, and parent recommendation is important in adolescents’ FP decisions (Klosky, Flynn, et al., 2017). Yet, parents may underestimate their adolescent’s reproductive concerns, desire to be a parent, and preference for biological children (Nahata et al., 2019). Most research has been retrospective, thus it is unclear how parent–child concordance at the time of a new diagnosis may be associated with FP decisions. Our aims were to examine: 1) parent–child concordance on fertility perspectives; 2) parental uncertainty about their son’s fertility perspectives; 3) family-level associations between parent concordance/uncertainty and their son’s FP attempts; and 4) family-level associations between parent concordance/uncertainty and their son’s age.

Methods: A pilot study assessed the impact of a novel family-centered values clarification tool (FAST) on FP attempts among adolescent males newly diagnosed with cancer. Eligible males were: 1) aged 12-25 years; 2) expected to receive chemotherapy and/or radiation; 3) pubertal/eligible for FP; 4) English-speaking, and 5) able to complete measures independently. Families were approached in the hospital after a fertility consult, before starting cancer treatment. Participants completed a demographic questionnaire and the FAST, which assessed adolescent fertility perspectives and parent perceptions of adolescent fertility perspectives. Domains included: perceived threat of infertility, perceived benefits of FP, and perceived barriers to FP. Responses were rated 1-4 (strongly disagree—strongly agree) and parents had the additional option of “unsure.” Parent and child scores were coded as: (1) concordant (both agree or both disagree) or (0) discordant (one agrees and one disagrees or parents were uncertain) and averaged by subscale and overall. Uncertainty scores were coded as (1) uncertain (parent marked unsure) and (0) certain (parent gave 1-4 response) and averaged by subscale and overall. To examine system-level concordance and uncertainty, mean scores were calculated across parents (25% of scores represented only one parent). Higher scores indicated more concordance and uncertainty.

Results: Of 41 eligible families, 39 (95%) enrolled, resulting in 99 participants (33 adolescents, 37 mothers, 29 fathers; Table 1). Adolescents were on average 16 years old, and 59% (n = 23) attempted FP. On average, dyads were concordant on about one-half of their responses, and parents were uncertain on about one-third of their responses. FP attempts were associated with higher levels of concordance on perceived benefits and lower levels of uncertainty on perceived barriers. Older adolescent age was significantly associated with higher concordance on perceived threat and benefits, but age was not associated with uncertainty (Table 2).

Conclusions: When parents had a greater understanding of their son’s fertility perspectives, families were more likely to attempt FP. Given that FP can prevent future distress in adult survivors of childhood cancer, it is important for clinicians to facilitate sharing of fertility perspectives within families. This may be particularly important for families with younger adolescents. Family-centered interventions should be developed and evaluated to optimize FP decision-making in adolescents newly diagnosed with cancer.

Authors

• Anna Lorraine Olsavsky, Nationwide Children's Hospital
  Presenting Author

• Taylor M. Dattilo, Oklahoma State University
  Non-Presenting Author

• Keagan G. Lipak, Ohio University
  Non-Presenting Author

• Stacy Whiteside, Nationwide Children's Hospital
  Non-Presenting Author

• Nicholas D. Yeager, Nationwide Children's Hospital
  Non-Presenting Author

• Anthony Audino, Nationwide Children's Hospital
  Non-Presenting Author

• James L. Klosky, Emory University School of Medicine
  Non-Presenting Author

• Sarah O'Brien, Nationwide Children's Hospital
  Non-Presenting Author

• Gwendolyn P. Quinn, New York University School of Medicine
  Non-Presenting Author

• Cynthia A. Gerhardt, The Research Institute at Nationwide Children's Hospital
  Non-Presenting Author

• Leena Nahata, The Research Institute at Nationwide Children's Hospital
  Non-Presenting Author