Agochukwu-Mmonu Nnenaya, Radix Asa, Zhao Lee, Makarov Danil, Bluebond-Langner Rachel, Fendrick A Mark, Castle Elijah, Berry Carolyn
Department of Urology, NYU School of Medicine, New York University, 221 East 41st Street, New York, NY, 10017, USA.
Department of Population Health, NYU School of Medicine, New York, NY, USA.
J Patient Rep Outcomes. 2022 Apr 25;6(1):39. doi: 10.1186/s41687-022-00446-x.
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.
跨性别者和非二元性别者（TGNB）常常经历性别焦虑。患有性别焦虑的TGNB个体可能会接受生殖器性别确认手术，包括阴道成形术、阴茎成形术或阴囊阴唇成形术，以使他们的泌尿生殖解剖结构与他们所体验到的性别相一致。鉴于社会污名的减少以及私人和公共支付方保险覆盖范围的增加，在过去几年中，生殖器性别确认手术迅速增加。随着生殖器性别确认手术发生率的上升，同步增加患者报告结局测量工具的开发和使用至关重要。迄今为止，尚无系统的方法来评估和衡量患者对其手术的看法，也没有经过验证的措施来获取接受生殖器性别确认手术的TGNB个体的患者报告结局。如果没有系统的方法来评估和衡量患者对其治疗的看法，可能会导致治疗的碎片化。这种碎片化可能会给确保患者的目标在共同决策中处于首要位置带来挑战。当我们旨在增加TGNB个体获得手术治疗的机会时，确保这种治疗以患者为中心且高质量非常重要。为接受生殖器性别确认手术的患者开发患者报告结局是确保以患者为中心的高质量治疗的第一步。在此，我们讨论为接受生殖器重建手术的跨性别和非二元性别患者开发经过验证的患者报告结局测量指标的迫切需求。我们还提出了一种患者参与的患者报告结局测量指标开发模型。
