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congruent with their gender identity. In the past decade increased recognition of gender dysphoria, decreasing social stigma towards TGNB individuals, and increasing insurance coverage have led to a threefold increase in gender-afrming surgeries [3–6]. Of gender-afrming surgeries, the incidence of genital gender-afrming surgery—vaginoplasty, phalloplasty and metoidioplasty—has steeply increased and is likely the most common inpatient gender-afrming surgery [7]. Although increased coverage has undoubtedly had many benefts for the TGNB community, to date, there have been few, if any, attempts to systematically assess patients’ perspectives on genital gender-afrming surgery. Without direct input from patients undergoing gender-afrming surgery, we cannot truly understand patients’ goals and preferences (e.g., sexual and aesthetic goals, quality of life) beyond amelioration of gender dysphoria, Open Access Journal of PatientReported Outcomes *Correspondence: Nnenaya.Mmonu@nyulangone.org 1 Department of Urology, NYU School of Medicine, New York University, 221 East 41st Street, New York, NY 10017, USA Full list of author information is available at the end of the article Agochukwu‑Mmonu et al. Journal of Patient-Reported Outcomes (2022) 6:39 Page 2 of 5 nor can we reliably assess the magnitude of benefts of gender-afrming surgery or prepare patients with realistic expectations of genital surgeries. Perhaps the most impactful result of a lack of explicit capture and incorporation of the patient perspective is the lack of shared decision-making and propagation of a paternalistic care model. Tis is evidenced by single-center studies, which have demonstrated evidence of decision-related regret and depending on an individuals’ goals, revision surgery [8–10]. Tere is also evidence that patients’ knowledge about outcomes after gender-afrming surgery is lacking and patients may have unrealistic expectations [11]. Te current system of outcome reporting prioritizes clinical outcomes, which only captures physicians’ reports of outcomes, is subject to bias, does not include the patients’ perspective and, hence, are inadequate. Te process of genital reconstruction is intensive and patients undertake signifcant risk to undergo life-changing genital genderafrming surgery; there is an urgent need for patientcentered metrics. Patient reported outcome measures (PROMs) are patient-centered metrics and represent a viable solution to these challenges and shortcomings. Main text PROMs developed by and for TGNB patients undergoing genital gender-afrming surgery are imperative to delivering high-value, high-quality, patient-centered care. Tere has been an increased recognition of the importance of PROMs generally, with concurrent emphasis on the patient experience as a fundamental component of quality of care. PROMs as defned by the FDA are “measurement[s] based on a report that comes directly from the patient about the status of a patient’s health condition without amendment or interpretation of the patient’s response by a clinician or anyone else.” [12] PROMs are patient-generated and patientcentered health data, are measures of care delivery, evaluate patients’ symptoms, functional status, health related quality of life, satisfaction with care, and provide a holistic view of the patient experience [13, 14]. While PROMs have traditionally been used as research tools, they are now recognized as meaningful clinical data elements, which may in certain instances be more accurate than those assessed by clinicians [15, 16]. PROMs have been shown to support clinical improvements and positively impact patients in several felds [14, 17–21]. In addition, preliminary data has demonstrated that PROMs may have an overwhelmingly positive impact in gender-afrming surgery as well [22]. Moreover, the TGNB community desires high-quality, long-term outcome data [23]. PROMs are especially necessary in reconstructive surgery given the challenge in evaluating short and long-term outcomes and quality. Reconstructive surgery is a complex journey for a patient and is purely patient-driven; PROMs will ensure that this journey is patient- centered at each step including the initial consultation, decision-making process, surgery, and perhaps most importantly, outcome reporting and measurement. While wide agreement for the need for PROMs in gender-afrming care exists [24, 25], there are many challenges to their development and implementation [26]. Questions such as how data should be most efectively collected, visualized, shared, and used to improve quality have limited the routine use of PROMs in clinical care [21]. Surmounting these challenges begins by considering the beneft of PROMs at the patient, provider, and system levels [27]. At the patient level, PROMs can help patients undergoing genital gender-afrming surgery develop realistic expectations. In addition, PROMs provide an opportunity to understand patients’ priorities and enable them to become fully informed about benefts, risks, and available options much earlier in the process of seeking genital gender-afrming surgery. Te routine collection of PROMs for patients undergoing genital genderafrming surgery and their utilization in clinical practice can facilitate the provision of a roadmap for patients at each step on this journey.
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