Evidence map›Paper›PMID 38722239›Full record

ArticleJournal of pediatric psychology2025

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

Abstract read
In one paragraph

Article in Journal of pediatric psychology, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

6 authors.

Diane ChenPotocsnak 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.ORCID 0000-0002-7302-9248
Elaine ShenDepartment of Psychiatry and Behavioral Sciences, Northwestern University Feinberg School of Medicine, Chicago, Illinois, United States.
Victoria D KolbuckPotocsnak 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.
Afiya SajwaniPotocsnak 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.
Courtney FinlaysonDepartment of Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, Illinois, United States.ORCID 0000-0001-9704-4525
Elisa J GordonDepartment of Surgery and Center for Biomedical Ethics and Society, Vanderbilt University Medical Center, Nashville, TN, United States.

Funding

Fertility Decision-Making in Youth and Young AdultsR21HD097459 · NICHD · LURIE CHILDREN'S HOSPITAL OF CHICAGO · PI CHEN, DIANE · 2018 to 2019
$436k
Eunice Kennedy Shriver National Institute of Child Health and Human DevelopmentNICHD NIH HHS R21 HD097459NIH HHS R21 HD097459
6 · The paper itself

Abstract

objectiveTo 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.

methodTNB 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).

resultsTwenty-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.

conclusionsWe 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.

Indexed as

Decision Making, SharedDecision Support TechniquesFertility PreservationInternetTransgender PersonsUser-Centered DesignAdolescentAdultFemaleHumansMaleParentsYoung AdultadolescentseHealth/mHealth/digital healthemerging/young adultshealth care services and utilizationhealth disparities and inequitiessexual or reproductive health

Identifiers

PMID38722239
PMCPMC11753870

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.