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

Abstract

In Australia and New Zealand, there has not been a national systematic development of oncofertility services for cancer patients of reproductive age although many cancer and fertility centers have independently developed services. A number of barriers exist to the development of these services, including a lack of clear referral pathways, a lack of communication between clinicians and patients about fertility preservation, differences in the knowledge base of clinicians about the risk of cancer treatment causing infertility and fertility preservation options, a lack of national health insurance funding covering all aspects of fertility preservation, and storage costs and cultural, religious, and ethical barriers. The development of strategies to overcome these barriers is a high priority for oncofertility care to ensure that equitable access to the best standard of care is available for all patients. The FUTuRE Fertility Research Group led a collaborative consultation process with the Australasian Oncofertility Consumer group and oncofertility specialists to explore consumers' experiences of oncofertility care. Consumers participated in qualitative focus group meetings to define and develop a model of consumer driven or informed "gold standard oncofertility care" with the aim of putting together a Charter that specifically described this. The finalized Australasian Oncofertility Consortium Charter documents eight key elements of gold standard oncofertility care that will be used to monitor the implementation of oncofertility services nationally, to ensure that these key elements are incorporated into standard practice over time.