JMIR Publications

ABSTRACT

Background:

As cancer treatments continue to improve, it is increasingly important that reproductive-aged young women have an opportunity to decide whether they want to undergo fertility preservation treatments to try to protect their ability to have a child after cancer. Clinical practice guidelines recommend that providers offer fertility counseling to all young women with cancer, but as few as 12% of women recall discussing fertility preservation. Patients report limited awareness, opportunity, and time to make this complex personal decision. The long-term goal of this program of research is to develop an interactive webbased patient decision aid to improve awareness, access, knowledge, and decision making for all young women with cancer. The International Patient Decision Aid Standards collaboration recommends a formal decisional needs assessment to inform and guide the design of understandable, meaningful, and usable patient decision aid interventions.

Objective:

This study assessed providers’ and survivors’ fertility preservation decision-making experiences, unmet needs, and design preferences to inform the development of a web-based patient decision aid.

Methods:

Semi-structured interviews and an ad hoc focus group assessed current decision-making experiences, unmet needs, and recommendations for a patient decision aid. Two researchers coded and analyzed transcripts using NVIVO. A stakeholder advisory panel guided the study and interpretation of results.

Results:

A total of 51 participants participated in 46 interviews (n=18 providers and 28 survivors) and 1 ad hoc focus group (n=7 survivors). Primary themes included (1) the importance of fertility decisions for survivorship, (2) significant but potentially modifiable barriers to optimal decision making exist, and (3) there is strong support for developing a patient decision aid website. Providers reported needing an intervention that could quickly raise awareness and facilitate timely referrals. Survivors reported needing understandable information and help with managing uncertainty, costs, and pressures. Design recommendations included: providing tailored information (eg, by age and cancer type), optional interactive features, and multimedia delivery at multiple time points, preferably outside the consultation.

Conclusions:

Decision making about fertility preservation is an important step in providing high-quality comprehensive cancer care, and a priority for many survivors’ optimal quality of life. Decision support interventions are needed to address gaps in care and help women quickly navigate towards an informed, values-congruent decision. Survivors and providers support developing a patient decision aid website to make information directly available to women outside of the consultation and to provide self-tailored content according to women’s clinical characteristics and their information-seeking and deliberative styles. Clinical Trial: Not applicable