Abstract

Abstract Study question Is quality of female oncofertility care associated with quality of life, decisional conflict, regret, reproductive concerns, and fertility preservation knowledge in female cancer survivors? Summary answer Receiving high-quality integrated female oncofertility care is associated with an improved quality of life, and with less decisional conflict and regret in female cancer survivors. What is known already Female adolescent and young adult cancer patients should be informed about their infertility risks due to cancer treatment. However, adherence to oncofertility guidelines is far from optimal. At this moment, it is not known whether adherence to oncofertility guidelines measured with quality indicators is associated with a better quality of life, less decisional conflict, regret, and reproductive concerns in female cancer survivors Study design, size, duration A multicenter cross-sectional survey study was conducted to measure the association between quality of oncofertility care and patient-reported outcome measures (PROMs). Participants/materials, setting, methods Female AYA cancer survivors (18-40 years) who were diagnosed in 2016 or 2017, and received a (potential) gonadotoxic treatment were eligible to participate. They were recruited from six hospitals across the Netherlands and were asked to fill in a survey. Quality indicators were used to assess quality of care, and validated scales to assess PROMs. Quality indicator and PROM scores were calculated, and associations were analyzed by T-tests and multilevel multivariate analyses Main results and the role of chance In total, 121 out of 344 female cancer survivors participated. Female cancer survivors received a suboptimal quality of care with 8 out of 11 quality indicators scoring <90% adherence. Of all patients, 72,7% was informed about their infertility, 51,2% was offered a referral, with 18,8% all aspects were discussed in counselling, and 35,5% received written and/or digital information. When survivors were informed about infertility risks, and were offered fertility preservation counseling, and received digital/written information (i.e. adherence to three quality indicators), their quality of life was highest, and levels of decisional conflict and regret were lowest. Physical quality of life, decision regret, reproductive concerns, and fertility preservation knowledge scores were significantly influenced by female cancer survivor’s age, relationship status, strength of wish to conceive, and type of cancer. Limitations, reasons for caution Selection bias could have occurred as we have no insight into reasons for non-responding and we have a low response rate. Furthermore, recall bias could have played a role as patients were asked to fill in questions three to four years after their diagnosis, treatment, and consultation. Wider implications of the findings As quality of oncofertility care is suboptimal, strategies should be developed and tailored to the current gaps, and to guideline-specific barriers, to improve quality of care and, importantly, quality of life in female cancer survivors. Trial registration number N/A

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