Abstract

BackgroundDespite a significant number of studies on female fertility following childhood, adolescent, and young adult (CAYA) cancer, studies establishing precise (dose-related) estimates of treatment-related risks are still scarce. Previous studies have been underpowered, did not include detailed treatment information, or were based on self-report only without any hormonal assessments. More precise assessments of who is at risk for sub- or infertility are needed.ObjectiveThe objective of our study is to describe the design and methods of 2 studies on female fertility (a cohort study and a nested case-control study) among female survivors of CAYA cancer performed within the European PanCareLIFE project.MethodsFor the cohort study, which aims to evaluate the overall risk of fertility impairment, as well as the risk for specific subgroups of female CAYA cancer survivors, 13 institutions from 9 countries provide data on fertility impairment. Survivors are defined as being fertility impaired if they meet at least one of 8 different criteria based on self-reported and hormonal data. For the nested case-control study, which aims to identify specific treatment-related risk factors associated with fertility impairment in addition to possible dose-response relationships, cases (fertility impaired survivors) are selected from the cohort study and matched to controls (survivors without fertility impairment) on a 1:2 basis.ResultsOf the 10,964 survivors invited for the cohort study, data are available from 6619 survivors, either questionnaire-based only (n=4979), hormonal-based only (n=72), or both (n=1568). For the nested case-control study, a total of 450 cases and 882 controls are identified.ConclusionsResults of both PanCareLIFE fertility studies will provide detailed insight into the risk of fertility impairment following CAYA cancer and diagnostic- or treatment-related factors associated with an increased risk. This will help clinicians to adequately counsel both girls and young women, who are about to start anticancer treatment, as well as adult female CAYA cancer survivors, concerning future parenthood and to timely refer them for fertility preservation. Ultimately, we aim to empower patients and survivors and improve their quality of life.Registered Report IdentifierRR1-10.2196/10824

Highlights

  • Advances in diagnosis and treatment of childhood cancer have led to major improvements in 10-year survival rate, which exceeds 80% [1]

  • For the nested case-control study, a total of 450 cases and 882 controls are identified. Results of both PanCareLIFE fertility studies will provide detailed insight into the risk of fertility impairment following CAYA cancer and diagnostic- or treatment-related factors associated with an increased risk

  • The aim of the female fertility cohort study is to evaluate the overall prevalence of fertility impairment among female CAYA cancer survivors who are at least 5 years past diagnosis and alive at the time of study assessment. It aims to assess the prevalence of fertility impairment for specific subgroups of female CAYA cancer survivors based on cancer diagnosis, type of treatment, age at treatment, and calendar period of treatment

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Summary

Introduction

Advances in diagnosis and treatment of childhood cancer have led to major improvements in 10-year survival rate, which exceeds 80% [1]. Despite a significant number of studies on female fertility following childhood and adolescent cancer, studies establishing precise (dose-related) estimates of treatment-related risks are scarce. More precise assessments of who is at risk, either for immediate and persistent infertility or a shorter-than-anticipated reproductive window, are essential to prevent involuntary childlessness, secondary infertility (ie, incomplete family planning), and increased use of artificial reproductive techniques [15] Assessments should include both established and relatively new clinical markers, for example, evaluation of menstrual and pregnancy history or levels of follicle stimulating hormone (FSH) and anti-Müllerian hormone (AMH). Despite a significant number of studies on female fertility following childhood, adolescent, and young adult (CAYA) cancer, studies establishing precise (dose-related) estimates of treatment-related risks are still scarce. More precise assessments of who is at risk for sub- or infertility are needed

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