Patient reported outcomes in genital gender-affirming surgery: the time is now

Nnenaya Agochukwu-Mmonu, Asa Radix, Lee Zhao, Danil Makarov, Rachel Bluebond-Langner, A. Mark Fendrick, Elijah Castle, Carolyn Berry

Research output: Contribution to journalComment/debatepeer-review


Transgender and non-binary (TGNB) individuals often experience gender dysphoria. TGNB individuals with gender dysphoria may undergo genital gender-affirming surgery including vaginoplasty, phalloplasty, or metoidioplasty so that their genitourinary anatomy is congruent with their experienced gender. Given decreasing social stigma and increasing coverage from private and public payers, there has been a rapid increase in genital gender-affirming surgery in the past few years. As the incidence of genital gender-affirming surgery increases, a concurrent increase in the development and utilization of patient reported outcome measurement tools is critical. To date, there is no systematic way to assess and measure patients’ perspectives on their surgeries nor is there a validated measure to capture patient reported outcomes for TGNB individuals undergoing genital gender-affirming surgery. Without a systematic way to assess and measure patients’ perspectives on their care, there may be fragmentation of care. This fragmentation may result in challenges to ensure patients’ goals are at the forefront of shared- decision making. As we aim to increase access to surgical care for TGNB individuals, it is important to ensure this care is patient-centered and high-quality. The development of patient-reported outcomes for patients undergoing genital gender-affirming surgery is the first step in ensuring high quality patient-centered care. Herein, we discuss the critical need for development of validated patient reported outcome measures for transgender and non-binary patients undergoing genital reconstruction. We also propose a model of patient-engaged patient reported outcome measure development.

Original languageEnglish (US)
Article number39
JournalJournal of Patient-Reported Outcomes
Issue number1
StatePublished - Dec 2022


  • Gender-affirming surgery
  • Metoidioplasty
  • PROs
  • Patient reported outcomes
  • Phalloplasty
  • Vaginoplasty

ASJC Scopus subject areas

  • Health Informatics
  • Health Information Management


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