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Abstract
Background: Cancer patients’ fertility can be affected by cancer treatment. It is one of the most distressing adverse consequences of cancer treatment so there is an expectation that the reproductive health of patients should be preserved whenever possible. A major gap in cancer management with implication for patient’s future fertility is the lack of robust oncofertility data and evidence based oncofertility models of care (MOC).
Objective: The overall objective of my thesis is to create new knowledge about access, barriers and use of oncofertility services in order to provide a better understanding about reproductive complications. This will allow us to develop an oncofertility MOC and competency framework that will lead to improved access and implementation of oncofertility care across all cancer centres.
Method: Using a registry model the first Fertility Preservation (FP) Registry was designed and implemented to collect prospective data on the uptake, use and complications of FP. A prospective qualitative study of registry patients and parents/partners completed questionnaires to capture information about their reproductive care experiences, reproductive concerns and psychological distress at diagnosis, compared to age matched controls at diagnosis (TP1) and 12 months later (TP2).
Finally using data from consumer engagement and a systematic review on oncofertility MOC we used a quantitative modified Delphi methodology to conduct two rounds with the use of a web-based survey, querying and synthesizing opinions about statements regarding oncofertility MOC with health care professionals, patients and family members from 16 countries to develop an Oncofertility Competency Framework.
Conclusion: As a direct consequence of this program of research, I have established an ‘Oncofertility Consortium Charter’ an ‘Oncofertility MOC and ‘Oncofertility Competency Framework.’ The competency framework gives 108 competencies which will provide HCP’s and services with a structure for the development of oncofertility care as well as defining the role HCP’s play in providing oncofertility care and support. These documents provide a strong foundation for the implementation of oncofertility care.