期刊
JOURNAL OF CANCER SURVIVORSHIP
卷 12, 期 1, 页码 101-114出版社
SPRINGER
DOI: 10.1007/s11764-017-0649-5
关键词
Decision support techniques; Decision making; Fertility preservation; Cancer
资金
- University of Texas MD Anderson Cancer Center Duncan Family Institute for Cancer Prevention and Risk Assessment
To improve survivors' awareness and knowledge of fertility preservation counseling and treatment options, this study engaged survivors and providers to design, develop, and field-test Pathways: a fertility preservation patient decision aid website for young women with cancerA (c). Using an adapted user-centered design process, our stakeholder advisory group and research team designed and optimized the Pathways patient decision aid website through four iterative cycles of review and revision with clinicians (n = 21) and survivors (n = 14). Field-testing (n = 20 survivors) assessed post-decision aid scores on the Fertility Preservation Knowledge Scale, feasibility of assessing women's decision-making values while using the website, and website usability/acceptability ratings. Iterative stakeholder engagement optimized the Pathways decision aid website to meet survivors' and providers' needs, including providing patient-friendly information and novel features such as interactive value clarification exercises, testimonials that model shared decision making, financial/referral resources, and a printable personal summary. Survivors scored an average of 8.2 out of 13 (SD 1.6) on the Fertility Preservation Knowledge Scale. They rated genetic screening and having a biological child as strong factors in their decision-making, and 71% indicated a preference for egg freezing. Most women (> 85%) rated Pathways favorably, and all women (100%) said they would recommend it to other women. The Pathways decision aid is a usable and acceptable tool to help women learn about fertility preservation. The Pathways decision aid may help women make well-informed values-based decisions and prevent future infertility-related distress.
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