Patient‐reported outcome measures for assessing urinary dysfunction following gender‐affirming genital surgery: A narrative review of the literature
Authors: Keiner Cathrine , Okamuro Kyle , Bate Taylor , Dy Geolani , Anger Jennifer 
Published: August 2024

Introduction

Gender‐affirming genital surgery is one of several surgical procedures available to transgender and nonbinary (TGNB) individuals to improve congruence between their gender identity and sex assigned at birth. Despite increasing utilization of these procedures, patient‐reported outcome measures (PROMs) to assess subjective outcomes following gender‐affirming genital surgery remain limited. Our aim was to provide a synopsis of PROMs currently being used to evaluate urinary outcomes among TGNB patients following gender‐affirming genital surgery and to assess each PROM for content that is relevant to TGNB patients.

Methods

A multidatabase search was performed (Embase and PubMed) using search terms that included transgender, patient‐reported outcome measures, questionnaire, and gender‐affirming surgery. Studies that assessed subjective outcomes related to urinary outcomes and pelvic floor dysfunction following gender‐affirming genital surgery were reviewed. Gender‐affirming genital surgery included vaginal reconstruction (vaginoplasty) and penile reconstruction (phalloplasty and metoidioplasty). Included studies were evaluated for relevant content items and summarized in table.

Results

Our literature search identified 820 unique articles. Twenty‐seven full articles were included in the final review. Until recently, measurement tools have been limited to unvalidated ad hoc questionnaires or PROMs developed for other conditions, such as urinary incontinence or vaginal prolapse, that are validated among the predominantly cisgender general population. Of the selected studies, PROMs used to evaluate urinary and pelvic floor dysfunction following gender‐affirming genital surgery included self‐construced ad hoc questionnaires (10 studies), Amsterdam Overactive Pelvic Floor Scale (four studies), King's Health Questionnaire (two studies), Pelvic Floor Distress Inventory (PFDI)−20 (two studies), Sheffield Pelvic Organ Prolapse (one study), International Consultation on Incontinence Questionnaire‐Urinary Incontinence (ICIQ‐UI) (one study), and ICIQ‐Female Lower Urinary Tract Symptoms (one study). The PFDI‐20 asked about the most relevant symptoms to TGNB patients following genital surgery; however, not all cisgender validated questionnaires included important questions about voiding position, splayed or misdirected stream. The Affirming Surgery Form and Function Individual Reporting Measure (AFFIRM) questionnaire is the first PROM for assessing subjective urinary outcomes that are validated for TGNB individuals, and the GENDER‐Q is a promising new PROM with the aim of evaluating outcomes following surgical and other gender‐affirming treatments.

Conclusion

Despite recent advancements, a need remains for standardized assessment tools to evaluate pelvic floor dysfunction and urinary symptoms following gender‐affirming genital surgery. Questionnaires developed for the general population to assess symptoms of pelvic organ prolapse and other urinary dysfunction do not fully capture the experiences unique to TGNB individuals undergoing this type of surgery. Nonetheless, PROMs validated specifically for TGNB individuals are necessary to more accurately evaluate outcomes of gender‐affirming genital surgery, allow for informed patient counseling, and create evidence‐based changes to improve these interventions.