Experience of developing and evaluating a fertility preservation patient decision aid for teenage and adult women with cancer for use in oncology settings, UK (The Cancer, Fertility and Me study)

Background/Purpose: We report our experiences of developing a fertility preservation (FP) patient decision aid as part of the Cancer, Fertility and Me study. The purpose of this decision aid was to better support teenage and adult women (aged 16 years +) and diagnosed with any cancer in the UK, to make FP choices.

Methods and analysis: A prospective mixed‐method study was adopted. The research involved developing the decision aid (stage 1), user (alpha) testing the decision aid to gather feedback on its content and format from patients, cancer and fertility healthcare professionals (HCPs) and other key stakeholders (stage 2), and finally, field (beta) testing the resource to evaluate its acceptability when integrated into cancer care pathways around cancer diagnosis (stage 3).

Results: In stage 1, evidence syntheses of women's decision‐making needs, the existing open access FP resources and current clinical guidelines were undertaken. In stage 2, seven patients, ten HCPs, and nine key stakeholders completed a questionnaire and an additional telephone interview. Stage 3 is currently underway. So far, 23 women have been recruited and completed questionnaires and in‐depth interviews. Recruitment has been extended to fertility services due to the challenges of recruiting in oncology services.

Conclusions: Differences in opinion on the preferred content and format of the decision aid between patients and HCPs made tool development more challenging than anticipated. Whilst more resources to support FP decision‐making are desired by cancer patients, substantial work is needed to ensure they are used and integrated into routine oncology practice.