Attention: Restrictions on use of AUA, AUAER, and UCF content in third party applications, including artificial intelligence technologies, such as large language models and generative AI.
You are prohibited from using or uploading content you accessed through this website into external applications, bots, software, or websites, including those using artificial intelligence technologies and infrastructure, including deep learning, machine learning and large language models and generative AI.
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
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.
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.