Oncofertility Decision Support Resources for Women of Reproductive Age: Systematic Review

JMIR Cancer. 2019 Jun 6;5(1):e12593. doi: 10.2196/12593.


Background: Cancer treatments have the potential to cause infertility among women of reproductive age. Many cancer patients do not receive sufficient oncofertility information or referrals to reproductive specialists prior to starting cancer treatment. While health care providers cite lack of awareness on the available oncofertility resources, the majority of cancer patients use the internet as a resource to find additional information to supplement discussions with their providers.

Objective: Our aim was to identify and characterize Web-based oncofertility decision aids and health education materials accessible for women of reproductive age with a diagnosis of any cancer.

Methods: We searched five databases and the gray literature for the years 1994-2018. The developer and content information for identified resources was extracted. Each resource underwent a quality assessment.

Results: We identified 31 open access resources including 4 decision aids and 27 health educational materials. The most common fertility preservation options listed in the resources included embryo (31/31, 100%), egg (31, 100%), and ovarian tissue freezing (30, 97%). Notably, approximately one-third (11, 35%) contained references and 5 (16%) had a reading level of grade 8 or below. Resources were of varying quality; two decision aids from Australia and the Netherlands, two booklets from Australia and the United Kingdom, and three websites from Canada and the United States rated as the highest quality.

Conclusions: This comprehensive review characterizes numerous resources available to support patients and providers with oncofertility information, counseling, and decision making. More focus is required to improve the awareness and the access of existing resources among patients and providers. Providers can address patient information needs by leveraging or adapting existing resources to support clinical discussions and their specific patient population.

Keywords: cancer; decision aids; decision-making; fertility; health education materials; patient education; young women.