A Study Protocol for the Australasian Oncofertility Registry: Monitoring Referral Patterns and the Uptake, Quality, and Complications of Fertility Preservation Strategies in Australia and New Zealand

Abstract

Improvements in cancer diagnosis and treatment in patients of a reproductive age have led to significant improvements in survival rates; however, a patient's fertility can be affected by both cancer and its treatment. As survival rates improve, there is an expectation by clinicians and patients that patient's reproductive potential should be considered and protected as much as possible. However, there is a lack of data about current fertility preservation (FP) uptake as well as accurate data on the acute or permanent reproductive risks of cancer treatment, complications of FP in cancer patients, and the use and success of assisted reproductive technology by cancer survivors. FP remains a major gap in acute cancer management with lifelong implications for cancer survivors. The FUTuRE Fertility research team has established the first binational multisite Australasian Oncofertility Registry, which is collecting a complete oncofertility data set from cancer and fertility centers in Australia and New Zealand. Outcomes from the research study will monitor referral, uptake, and complications of FP, document patient's reproductive potential after treatment, and collect data on the use of assisted reproductive technology following cancer treatment. The data will be linked to other routine health and administrative data sets to allow for other research projects to be carried out. The changes in oncofertility care will be benchmarked against the Australasian Oncofertility Charter. The data will be used to develop evidence-based guidelines and resources, including development of accurate risk projections for patients' risk of infertility, allowing clinicians to make recommendations for FP or assisted reproductive technology. Australian New Zealand Clinical Trials Number-12615000221550.

Survey of Fertility Preservation Options Available to Patients With Cancer Around the Globe

“… 10 These databases track patient-specific information, including demographic details, cancer stage, and fertility-related issues as a result of cancer or its treatment. 11 FUTURE is expected to be a leading model for other countries to highlight their own systems’ assets as well as to identify their unmet needs.…”

Fertility preservation in oncology patients: A literature review examining current fertility preservation techniques and access to oncofertility services in Australia

“…Documentation of these discussions is not always optimal; while survey studies of patients recall discussions with their clinicians, reportedly only 47% of AYAs had a documented fertility discussion in their clinical notes in a recent population‐based Australian study . Site‐specific pathways are needed to ensure all patients have access to fertility preservation discussions as part of holistic oncology treatment, especially when considering prepubertal patients . Rates of referral for fertility consultation are considerably higher where a specific youth service or adolescent clinic is pre‐existing and as such, a global recommendation to establish more specialist youth fertility clinics would likely overcome the barrier of sub‐optimal referral pathways …”

“…51 Site-specific pathways are needed to ensure all patients have access to fertility preservation discussions as part of holistic oncology treatment, especially when considering prepubertal patients. 6,52 Rates of referral for fertility consultation are considerably higher where a specific youth service or adolescent clinic is pre-existing and as such, a global recommendation to establish more specialist youth fertility clinics would likely overcome the barrier of sub-optimal referral pathways. 48,50,53 Other primary barriers to improved care for oncofertility patients in Australia include access to resources, materials, education and training.…”

Utilizing the Experience of Consumers in Consultation to Develop the Australasian Oncofertility Consortium Charter

“…The FUTuRE fertility researcher group is currently collecting oncofertility data nationally using the AOFR. 44 When data are reported on the AOFR annually, the research group intends to report national oncofertility outcomes under the Charter themes. These outcomes will be reported nationally for the purposes of research and government publications.…”

“…The Charter, in conjunction with the AOFR, 44 will enable local and national cancer services to focus on the development and incorporation of oncofertility services, which will encourage collaborative efforts on the part of both cancer and fertility clinicians, the development of referral pathways, an improvement in communication, and improved knowledge about the risk of infertility.…”