Co-design and usability of an interactive web-based fertility decision aid for transgender youth and young adults

Diane Chen; Elaine Shen; Victoria D Kolbuck; Afiya Sajwani; Courtney Finlayson; Elisa J Gordon

doi:10.1093/jpepsy/jsae032

Co-design and usability of an interactive web-based fertility decision aid for transgender youth and young adults

J Pediatr Psychol. 2024 May 9:jsae032. doi: 10.1093/jpepsy/jsae032. Online ahead of print.

Authors

Diane Chen^{1

2}, Elaine Shen², Victoria D Kolbuck¹, Afiya Sajwani^{1

2}, Courtney Finlayson^{3

4}, Elisa J Gordon⁵

Affiliations

¹ 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.
² Department of Psychiatry and Behavioral Sciences, Northwestern University Feinberg School of Medicine, Chicago, Illinois, United States.
³ Department of Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, Illinois, United States.
⁴ Division of Endocrinology, Department of Pediatrics, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, United States.
⁵ Department of Surgery and Center for Biomedical Ethics and Society, Vanderbilt University Medical Center, Nashville, TN, United States.

PMID: 38722239
DOI: 10.1093/jpepsy/jsae032

Abstract

Objective: 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.

Method: 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).

Results: 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.

Conclusions: 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.

Keywords: adolescents; eHealth/mHealth/digital health; emerging/young adults; health care services and utilization; health disparities and inequities; sexual or reproductive health.

Abstract

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