Most AYA Cancer Survivors Do Not Properly Understand Their Fertility Risks

Young adults and adolescents (AYA) who are female cancer survivors frequently both overestimate and underestimate their risk of infertility following cancer treatment, according to a study published in JAMA Network Open.

These findings demonstrate the importance of proper counseling throughout survivorship to decrease fertility-related psychological distress and inform family planning decisions, noted study authors.

“As the findings of this cohort study suggest, fertility information following cancer treatment continues to be an unmet need for AYA cancer survivors,” Hena Naz Din, PhD, associate director of clinical trial operations in the Stanford University Pediatric Stem Cell Transplantation unit, wrote in the study. “Age-appropriate and repeated fertility counseling throughout survivorship care informed by objective risk measures may help reduce concerns and misperceptions around fertility.”

Key Findings

A total of 785 female patients were enrolled to this study; the mean age was 33.2 years at enrollment and 25.9 years at the time of their diagnosis. Most participants (61.5% [n = 483]) believed that they had an increased risk of infertility compared to females their age in the general population.

Those who had undergone prior treatment with a moderate or high-gonadotoxicity treatment also believed that they were much more likely to face infertility (adjusted odds ratio [AOR], 2.73; 95% CI, 1.87-3.97) compared with those who had received low-gonadotoxicity treatments (AOR, 15.39; 95% CI, 5.52-42.96).

However, an individual’s perception of their infertility risk had minimal agreement with their objective risk (κ = 0.19).

Of note, certain patients were more likely to underestimate their risk of infertility, like patients who had already given birth more than once (AOR, 4.17; 95% CI, 2.61-6.64).

Other patients were less likely to underestimate their risk, including older patients (AOR, 0.94; 95% CI, 0.89-0.98), those with prior infertility (AOR, 0.16; 95% CI, 0.07-0.38), and those with endocrine disorders (AOR, 0.35; 95% CI, 0.18-0.69).

Study Design

Patients in this study reported their perception of their own infertility risk compared with female individuals their age. They were asked to answer whether they felt they were at an increased risk, and consequently felt less fertile, or less able to become pregnant, or not.

Investigators then calculated their objective risk of infertility by analyzing their estimated gonadotoxicity, menstrual patterns, and ovarian reserve. High-toxicity treatments included pelvic radiation, stem cell or bone marrow transplant, or treatment with a cyclophosphamide at a dose of 7 g/m² or greater. Low-toxicity treatments included surgery alone (not including oophorectomy), endocrine therapy alone, and radioiodine treatment. Other treatments were considered moderate toxicity.

Multivariable logistics regression was used to determine factors associated with under- or overestimating infertility risks.

Significance

Those who survive cancer are more likely to face fertility risks and more pregnancy complications compared to siblings who never had cancer. Yet, many adolescent or young adult cancer survivors can have children following cancer, and therefore, infertility concerns can cause substantial psychological distress that may not always be warranted.

Based on these findings, the investigators assert that better counseling need be available for this patient population, to help them better understand their own family planning options.

“Strategies to reduce misalignment between perceptions and actual risk are essential to reducing psychological distress and allow for better informed reproductive decisions for AYA cancer survivors,” they concluded.

Reference

Din HN, Singh-Carlson S, Corliss HL, et al. Perceived and Objective Fertility Risk Among Female Survivors of Adolescent and Young Adult Cancer. JAMA Netw Open. 2023;6(10):e2337245. Published 2023 Oct 2. doi:10.1001/jamanetworkopen.2023.37245