Knowledge and Beliefs About Oncofertility and Associations with Quality of Life Among Adolescent and Young Adult Survivors of Pediatric Cancer

Abstract

Purpose: Adolescent and young adult (AYA) cancer survivors experience fertility and childrearing challenges in adulthood, but there is limited evidence on awareness, beliefs, and concerns about oncofertility in this population, needs for supportive resources, and associations with quality of life (QoL).

Methods: Participants were 69 AYAs aged 12-25 who were diagnosed with cancer at age 18 years or younger and ≥1 year cancer free, recruited from childhood cancer clinical records and support organizations. Participants completed self-report assessment of oncofertility knowledge and beliefs, information needs, and measures of QoL. Analyses examined associations between oncofertility-related variables and QoL.

Results: Knowledge and beliefs about oncofertility options were considerably low in the sample, and participants reported unmet oncofertility resource needs. In multivariable analyses, QoL was associated with beliefs valuing the importance of fertility in childhood cancer (β = 0.87, p = 0.01) and lower information needs (β = -1.19, p = 0.022).

Conclusions: Infertility is a well-documented effect of childhood cancer treatment. Our findings indicate that clinical providers are a preferred source of information for AYA patients, and there is a need to address oncofertility concerns and challenges in this group. Research is needed to examine barriers to addressing fertility issues in childhood cancer treatment and ways to promote dialogue between providers and patients and their families.

Keywords: oncofertility; perceptions; quality of life; supportive care; survivorship.

FIG. 1.

Adolescent and young adult survivors of pediatric cancer oncofertility information support needs.