Chen Diane, Shen Elaine, Kolbuck Victoria D, Sajwani Afiya, Finlayson Courtney, Gordon Elisa J
Potocsnak Family Division of Adolescent and Young Adult Medicine, Pritzker Department of Psychiatry and Behavioral Health, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, United States.
Department of Psychiatry and Behavioral Sciences, Northwestern University Feinberg School of Medicine, Chicago, Illinois, United States.
J Pediatr Psychol. 2025 Jan 1;50(1):40-50. doi: 10.1093/jpepsy/jsae032.
To develop a patient- and family-centered Aid For Fertility-Related Medical Decisions (AFFRMED) interactive website targeted for transgender and nonbinary (TNB) youth/young adults and their parents to facilitate shared decision-making about fertility preservation interventions through user-centered participatory design.
TNB youth/young adults interested in or currently receiving pubertal suppression or gender-affirming hormone treatment and parents of eligible TNB youth/young adults were recruited to participate in a series of iterative human-centered co-design sessions to develop an initial AFFRMED prototype. Subsequently, TNB youth/young adults and parents of TNB youth/young adults were recruited for usability testing interviews, involving measures of usability (i.e., After Scenario Questionnaire, Net Promotor Score, System Usability Scale).
Twenty-seven participants completed 18 iterative co-design sessions and provided feedback on 10 versions of AFFRMED (16 TNB youth/young adults and 11 parents). Nine TNB youth/young adults and six parents completed individual usability testing interviews. Overall, participants rated AFFRMED highly on measures of acceptability, appropriateness, usability, and satisfaction. However, scores varied by treatment cohort, with TNB youth interested in or currently receiving pubertal suppression treatment reporting the lowest usability scores.
We co-created a youth- and family-centered fertility decision aid prototype that provides education and decision support in an online, interactive format. Future directions include testing the efficacy of the decision aid in improving fertility and fertility preservation knowledge, decisional self-efficacy, and decision satisfaction.
开发一个以患者和家庭为中心的生育相关医疗决策辅助工具（AFFRMED）交互式网站，目标用户为跨性别和非二元性别（TNB）青年/年轻成年人及其父母，通过以用户为中心的参与式设计，促进关于生育力保存干预措施的共同决策。
招募对青春期抑制或性别肯定激素治疗感兴趣或正在接受此类治疗的TNB青年/年轻成年人以及符合条件的TNB青年/年轻成年人的父母，参与一系列以用户为中心的迭代式协同设计会议，以开发AFFRMED初始原型。随后，招募TNB青年/年轻成年人及其父母进行可用性测试访谈，包括可用性测量（即情景后问卷、净推荐值、系统可用性量表）。
27名参与者完成了18次迭代式协同设计会议，并对AFFRMED的10个版本提供了反馈（其中16名TNB青年/年轻成年人，11名父母）。9名TNB青年/年轻成年人及6名父母完成了个体可用性测试访谈。总体而言，参与者对AFFRMED在可接受性、适宜性、可用性和满意度方面给予了高度评价。然而，得分因治疗队列而异，对青春期抑制治疗感兴趣或正在接受该治疗的TNB青年报告的可用性得分最低。
我们共同创建了一个以青年和家庭为中心的生育决策辅助原型，以在线交互式形式提供教育和决策支持。未来方向包括测试该决策辅助工具在提高生育力和生育力保存知识、决策自我效能感以及决策满意度方面的效果。
