Patient-Reported Outcomes (PROs) and Patient Experiences in Fertility Preservation: A Systematic Review of the Literature on Adolescents and Young Adults (AYAs) with Cancer

Simple Summary With better survival rates for patients diagnosed with cancer, more attention has been put on future risks like fertility decline due to gonadotoxic treatment. This review focusses on patient-reported outcomes (PROs) and patient experiences among adolescent and young adults (AYAs) diagnosed with cancer. An extended search showed that health care providers need to acknowledge the importance of future fertility and discuss with every AYA the potential of fertility decline. AYAs often requested a referral to a fertility specialist to be informed about fertility preservation (FP) options. They also commonly asked for more patient-specific (written) information about FP options. A clear FP pathway can prevent a delay in receiving a referral to a fertility specialist to discuss FP options and initiating FP treatment. This patient-centered approach will optimize FP experiences and establish a process to achieve long-term follow up after FP treatment.Abstract With better survival rates for patients diagnosed with cancer, more attention has been focused on future risks, like fertility decline due to gonadotoxic treatment. In this regard, the emphasis during counselling regarding possible preservation options is often on the treatment itself, meaning that the medical and emotional needs of patients regarding counselling, treatment, and future fertility are often overlooked. This review focuses on patient-reported outcomes (PROs) and patient experiences regarding fertility preservation (FP)-among adolescents and young adults (AYAs) with cancer. A systematic review of the literature, with a systematic search of online databases, was performed, resulting in 61 selected articles. A quality assessment was performed by a mixed methods appraisal tool (MMAT). Based on this search, three important topics emerged: initiating discussion about the risk of fertility decline, acknowledging the importance of future fertility, and recognizing the need for more verbal and written patient-specific information. In addition, patients value follow-up care and the opportunity to rediscuss FP and their concerns about future fertility and use of stored material. A clear FP healthcare pathway can prevent delays in receiving a referral to a fertility specialist to discuss FP options and initiating FP treatment. This patient-centered approach will optimize FP experiences and help to establish a process to achieve long-term follow up after FP treatment.