Abstract
STUDY QUESTION: What changes can be detected in fertility preservation (FP) counselling (FPC) over time and what are the determinants associated with the referral of newly diagnosed female cancer patients, aged 0-39 years, to a specialist in reproductive medicine for FPC? SUMMARY ANSWER: Although the absolute number of patients receiving FPC increased over time, only 9.8% of all potential patients (aged 0-39 years) were referred in 2011 and referral disparities were found with respect to patients' age, cancer diagnosis and healthcare provider-related factors. WHAT IS KNOWN ALREADY: Referral rates for FPC prior to the start of gonadotoxic cancer treatment are low. Determinants associated with low referral and referral disparities have been identified in previous studies, although there are only scarce data on referral practices and determinants for FPC referral in settings with reimbursement of FP(C). STUDY DESIGN, SIZE, DURATION: We conducted a retrospective observational and questionnaire study in a Dutch university hospital. Data on all female cancer patients counselled for FP in this centre (2001-2013), as well as all newly diagnosed female cancer patients aged 0-39 years in the region (2009-2011) were collected. PARTICIPANTS/MATERIALS, SETTING, METHODS: Data were retrieved from medical records (FPC patients), cancer incidences reported by the Dutch Cancer Registry (to calculate referral percentages) and referring professionals (to identify reasons for the current referral behaviour). MAIN RESULTS AND THE ROLE OF CHANCE: In 2011, a total of 9.8% of the patients were referred for FPC. Patients aged 20-29 years or diagnosed with breast cancer or lymphoma were referred more frequently compared with patients under the age of 20 years or patients diagnosed with other malignancies. The absolute numbers of patients receiving FPC increased over time. Healthcare provider-related determinants for low referral were not starting a discussion about fertility-related issues, not knowing where to refer a patient for FPC and not collaborating with patients' associations. LIMITATIONS, REASONS FOR CAUTION: Actual referral rates may slightly differ from our estimation as there may have been patients who did not wish to receive FPC. Sporadically, patients might have been directly referred to other regions or may have received ovarian transposition without FPC. By excluding skin cancer patients, we will have underestimated the group of women who are eligible for FPC as this group also includes melanoma patients who might have received gonadotoxic therapy. WIDER IMPLICATIONS OF THE FINDINGS: The low referral rates and referral disparities reported in the current study indicate that there are opportunities to improve referral practices. Future research should focus on the implementation and evaluation of interventions to improve referral practices, such as information materials for patients at oncology departments, discussion prompts or methods to increase the awareness of physicians and patients of FP techniques and guidelines. STUDY FUNDING/COMPETING INTERESTS: This work was supported by the Radboud university medical center and the Radboud Institute for Health Sciences. The authors have declared no conflicts of interest with respect to this work. TRIAL REGISTRATION NUMBER: Not applicable.
