Oncofertility care evaluation of 599 children and adolescents with cancer and a high risk of treatment-induced gonadal damage: a national paediatric oncology cohort study.

Abstract

Study question: What is the quality of our standard oncofertility care, with a focus on fertility counselling and preservation rates, in children and adolescents with cancer and a high risk of treatment-induced gonadal damage (HRgd) at our national centralised paediatric oncology centre?

Summary answer: Standardised personalised oncofertility care was achieved in 66.1% of identified HRgd children and adolescents with cancer, of whom 60.1% of patients underwent fertility preservation methods.

What is known already: Increasing survival rates among childhood cancer patients have heightened awareness of long-term treatment-related toxicities, including gonadal damage and subsequent risk of infertility. The American Society for Reproductive Medicine and the International Guideline Harmonization Group recommend that fertility preservation counselling should be offered to paediatric and adolescent cancer patients at high risk of gonadal damage, including consideration of gonadal tissue preservation when appropriate. However, evidence on the implementation of oncofertility care programmes in HRgd paediatric and adolescent cancer patients remains limited.

Study design, size, duration: This descriptive cohort study reports on standard oncofertility care in a national prospective cohort of HRgd childhood cancer patients, between January 2020 and December 2023, in our national paediatric oncology centre.

Participants/materials, setting, methods: In all HRgd childhood cancer patients, who were diagnosed or relapsed between January 2020 and December 2023 in the Princess Máxima Center, our standard oncofertility care strategy was evaluated. Prospective collection of demographics, tumours, treatment, and oncofertility care details, as well as retrospective collection and analysis of reasons why HRgd patients and their families were not counselled or did not undergo fertility preservation, was performed.

Main results and the role of chance: Between January 2020 and December 2023, 599 patients (age range 0-23 years; 345 males, 254 females) were triaged as HRgd (459 children newly diagnosed and 140 relapsed patients), including 396 (66.1%) who were counselled with 238 of these (60.1%) undergoing fertility preservation. Reasons why HRgd patients did not receive fertility counselling (n = 203/599, 34%) included their clinical status at diagnosis, young age of the patient, and anticipated poor prognosis. Uncertainties regarding future reproductive outcomes after autotransplantation of preserved tissue and concerns about potential risks of preservation procedures, were reasons for HRgd patients (n = 158/396, 40%) to refrain from fertility preservation.

Limitations, reasons for caution: Triage information of HRgd patients who were diagnosed and/or relapsed during the establishment of oncofertility care in our centre may still be lacking.

Wider implications of the findings: Further improvement in oncofertility care is warranted by counselling all HRgd patients and offering all of them gonadal tissue preservation through standardised documentation, whenever applicable. Future knowledge on reproductive and safety outcomes after cryopreservation and autotransplantation of gonadal tissue will further enhance fertility counselling.

Funding: This project is cofounded by funding from the Princess Máxima Center for Pediatric Oncology, the Twinning in Research and Education to improve survival in childhood solid tumours in Lithuania (TREL) project (H2020-EU.4.b grant number 952438), and SCAling up early and late effects Research in Lithuanian childhood cancer survivors through Education and Twinning (SCARLET) project (Horizon CSA grant number 10119949). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Disclosures: The authors have declared that no competing interests exist.

Trial registration numbers: METC research file NL72115.041.19 (METC-protocol number 19/783, Netherlands trial register number NL8192); METC research file NL73818.000.21 (METC-protocol number 0000002974).