Endocrine Abstracts

JOINT2305

Background: Endocrine late effects impacting reproductive function are a major concern for childhood cancer survivors. Despite increasing research, significant knowledge gaps persist regarding thresholds and risk factors for hypogonadism, genetic predispositions, fertility preservation efficacy, and the role of communication and decision-support tools.

Methods: FeProCAYA, a cohort study within the FePro-Ulm research center at the University Medical Center Ulm (funded by the Federal Ministry of Education and Research, BMBF), examines fertility risks in individuals treated for childhood and adolescent conditions associated with impaired adult fertility. This analysis assessed endocrine late effects, fertility-related quality of life (WHOQOL-BREF), and reproductive concerns (RCAC) in long-term childhood cancer survivors (≥20 years post-diagnosis) via an online questionnaire.

Results: From clinical records, 225 eligible survivors (diagnosed <18 years) who received potentially gonadotoxic treatment at the University Medical Center Ulm between 1999 and 2004 were identified. Of these, 169 with valid postal addresses were invited to participate, and 51 (30 female; response rate 30.2%) completed the survey. The median age was 28.0 years (range 20–40), with a median follow-up of 23.0 years (range 20–26). Endocrine conditions were self-reported by 60.8% (n = 31), most commonly hypothyroidism (n = 15), osteoporosis/repeated fractures (n = 12), sex hormone replacement (n = 6), and growth hormone deficiency (n = 4). A BMI ≥25 kg/m² was reported by 41.2% (n = 21). While 21.6% (n = 11) had children, 66.7% (n = 34) expressed significant fertility concerns, and 62.8% (n = 32) reported unmet information needs regarding fertility after cancer. Notably, only 49% (n = 25) recalled receiving fertility counseling before treatment or during follow-up care.

Conclusions: Structured and repeated reproductive health counseling during long-term follow-up may help address unmet information needs and improve fertility-related quality of life in childhood cancer survivors, a population already facing a high disease burden.