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PATIENT PERSPECTIVES TRANS-ARC: Centering Trans and Nonbinary Patient Perspectives in Genital Gender-Affirming Surgery Research

By: Gaines Blasdel; John L. Gore, MD, MS; Ina Amarillo, PhD; Jae Downing, PhD; Amy Penkin, LCSW; Cris Avery; Mary Marsiglio, PhD; Sachiko Ragosta; Robin Knauerhase; Geolani Dy, MD | Posted on: 01 May 2022

Figure. TRANS-ARC attendee demographics and a timeline of the prioritization process.

Introduction and Objectives

For a long while, genital gender-
affirming surgery (GGAS) research has conducted inquiry and assigned endpoints from an external, cisgender, surgeon-centered perspective. Our objective is to describe inclusive and affirmative collection of research questions resulting from a community-engaged research prioritization process centering around transgender and nonbinary perspectives in GGAS research in the United States.

“This is the first community-engaged process for generating CER questions in GGAS.”

Methods

A steering committee of 14 health professionals, advocates and researchers from across the United States were convened to initiate a research prioritization process using a modified Delphi approach. Two online surveys were sent to English-speaking trans and nonbinary people and other stakeholders, first to generate priority research topics and second to rank order research topics. A 2-day virtual summit was attended by 80 stakeholders who generated comparative effectiveness research (CER) questions. Post-summit, a third online survey was released to prioritize these CER questions. The primary author presenting the findings is a urological patient and steering committee member; coauthors are additional steering committee members, including nonpatient health professionals.

Table. Prioritized research questions generated by TRANS-ARC

Results

Demographics of the majority of trans nonbinary-identified summit attendees, as well as a timeline of the prioritization process, are described in the figure. We present a prioritized list of CER questions in the table, including 6 pertaining to vaginoplasty and vulvoplasty, 6 pertaining to phalloplasty and metoidioplasty and 5 questions applicable to all genital gender-affirming surgeries.

Conclusions

This is the first community-
engaged process for generating CER questions in GGAS. Incorporating patient perspectives increases participation and ensures that research findings are meaningful to patients; thus, investigators, internal review boards and funders are encouraged to utilize these CER questions.

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