Department of Gynecologic Oncology and Reproductive Medicine, The University of Texas MD Anderson Cancer Center, 1155 Pressler Street, Unit 1362, Houston, TX, 77030, USA.
Division of Reproductive Endocrinology and Infertility, Department of Obstetrics and Gynecology, Baylor College of Medicine, 1 Baylor Plaza, Houston, TX, 77030, USA.
J Cancer Surviv. 2018 Feb;12(1):101-114. doi: 10.1007/s11764-017-0649-5. Epub 2017 Oct 15.
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 cancer©.
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.
为了提高生存者对生育力保存咨询和治疗选择的认识和了解，本研究邀请生存者和提供者共同设计、开发和现场测试了“Pathways：癌症年轻女性生育力保存决策辅助工具网站©”。
使用适应性的以用户为中心的设计过程，我们的利益相关者顾问小组和研究团队与临床医生（n=21）和生存者（n=14）一起通过四个迭代周期的审查和修订，对 Pathways 生育力保存决策辅助工具网站进行了设计和优化。现场测试（n=20 名生存者）评估了决策辅助工具后的生育力保存知识量表评分、在使用网站时评估女性决策价值观的可行性，以及网站的可用性/可接受性评分。
迭代式的利益相关者参与优化了 Pathways 决策辅助工具网站，以满足生存者和提供者的需求，包括提供患者友好的信息和新颖的功能，如互动价值澄清练习、展示共同决策的案例、财务/推荐资源，以及可打印的个人总结。生存者在生育力保存知识量表上的平均得分为 13 分中的 8.2 分（标准差 1.6）。她们将基因筛查和拥有生物学后代评为决策中的重要因素，71%的人表示倾向于进行卵子冷冻。大多数女性（>85%）对 Pathways 评价良好，所有女性（100%）表示愿意将其推荐给其他女性。
Pathways 决策辅助工具是一种可用且可接受的工具，可帮助女性了解生育力保存。
Pathways 决策辅助工具可能有助于女性做出明智的基于价值观的决策，并预防未来与不孕相关的困扰。
