Experiences of Female Childhood Cancer Patients and Survivors Regarding Information and Counselling on Gonadotoxicity Risk and Fertility Preservation at Diagnosis: A Systematic Review

SIMPLE SUMMARY: Due to the significant increase in overall survival rates of childhood cancer, more awareness has been raised for the long-term consequences of treatment, including infertility. Currently, patients and their families are offered information regarding the risk of gonadal damage by paediatric oncologists and fertility counselling by fertility specialists regarding fertility preservation. However, the experiences of childhood cancer patients with oncofertility care are underreported. The available evidence reported in this review shows that female patients and survivors are variably satisfied with fertility information and report challenges in communication. They prefer to receive general information at diagnosis and detailed information later. Regrets are reported after refusal of fertility preservation. Patients and survivors are concerned about future children’s health, effect on relationships and lack of control over fertility. With the results from this review, (international) standards for information for paediatric cancer patients and families may be developed to improve fertility information and counselling for current and future childhood cancer patients and survivors. ABSTRACT: Background: Childhood cancer patients and their families are increasingly offered oncofertility care including information regarding their risk of gonadal damage by paediatric oncologists, fertility counselling by fertility specialists and fertility preservation options. However, experiences regarding oncofertility care are underreported. We aimed to summarize the available evidence of experiences of female childhood cancer patients and survivors regarding oncofertility care. Methods: Manuscripts were systematically identified using the PubMed and Embase database. From, respectively, 1256 and 3857 manuscripts, 7 articles were included and assessed, including risk of bias assessment. Outcome measures included data describing experiences of female childhood cancer patients and survivors, regarding fertility information, counselling and/or preservation. Results: Female patients and survivors are variably satisfied with fertility information, report challenges in communication with healthcare professionals and prefer to receive general information at diagnosis and detailed fertility information later. Regrets after fertility counselling are underreported, but are associated with refusing fertility preservation. Lastly, regardless of counselling, female patients and survivors report fertility concerns about their future children’s health and effect on relationships. Conclusion: Currently, the satisfaction with oncofertility care varies and female patients or survivors report regrets and concerns regardless of receiving fertility information or counselling. These results may help to improve the content of fertility information, communication skills of healthcare professionals and timing of counselling.