ESPE Yearbook of Paediatric Endocrinology

Brief Summary: This retrospective cohort study assessed whether estimated treatment gonadotoxicity and posttreatment menstrual patterns are associated with higher infertility risk perception in a group of survivors of adolescent or young adult cancer (age 15-39 years).

Participants reported their menstrual pattern and infertility risk perception and were categorized as increased risk (feeling less fertile or unable to become pregnant) or no increased risk (feeling fertile) compared with control female individuals of similar age. Basal ovarian function and reserve were assessed by hormone levels measured on a self-collected dried blood spots.

Overall, 417/654 (63.8%) accurately assessed their risk; 96 (14.7%) had no objective or perceived increased risk, and 321 (49.1%) had objective and perceived increased risk. 83 participants (12.7%) overestimated their risk, and 154 (23.5%) underestimated their risk. Prior exposure to treatments with moderate or high gonadotoxicity was associated with higher odds of perceiving increased infertility risk. Amenorrhea and irregular cycles were associated with higher odds of perceiving increased infertility risk. Multiparity was associated with increased odds of underestimation, while older age, endocrine comorbidity and prior infertility were associated with lower odds of underestimation. Multiparity, breast cancer and skin cancer were associated with lower odds of overestimation.

Many cancer survivors experience fertility problems, but data on their perceptions and awareness of their fertility issues and their adjustment with objective infertility risk are scarce. Risk perceptions directly influence health behaviours, medical information seeking and treatment compliance. This study confirms that cancer survivors perceive increased infertility risk, many are able to appropriately estimate its degree. Counselling on infertility risk throughout survivorship is needed to reduce misalignment between perceptions and actual risk, decrease psychological distress, and correctly inform family planning decisions.