Citation
Kaur MN, Rae C, Morrison SD, Laungani A, Brassard P, Mullender MG, van de Grift TC, Young-Afat DA, Sørensen JA, Poulsen L, Cornacchi SD, Graesser JG, Igbokwe MM, Satterwhite T, Pang JH, Akhavan AA, Hu A, Johnson N, Cano SJ, Savard K, Mundinger GS, Capitán-Cañadas F, Simon D, Capitán L, Coon D, Brydges HT, Bluebond-Langner R, Rodriguez ED, Zhao LC, Armstrong KA, Dean NR, Crittenden TA, Cannell ZA, Lane M, Haley CA, Hsu J, Dy GW, Peters BR, Berli JU, Milano CE, Lava CX, Fan KL, Del Corral GA, Kaoutzanis C, Kalia N, Higuchi T, Ganor O, Subedi S, Douglass LM, Hamidian Jahromi A, Hosseini HC, Ihnat J, Parikh N, Hu K, Alperovich M, Ray EC, Aref Y, Hassan BA, Liang F, Mundy L, Chen ML, Pusic AL, Klassen AF. Development and Assessment of a Patient-Reported Outcome Instrument for Gender-Affirming Care. JAMA Netw Open. 2025 Apr 1;8(4):e254708. doi: 10.1001/jamanetworkopen.2025.4708. PMID: 40249619; PMCID: PMC12008761.
Abstract
There is an urgent need for a validated gender-affirming care-specific patient-reported outcome measure (PROM). To field test the GENDER-Q, a new PROM for gender-affirming care, in a large, international sample of transgender and gender diverse (TGD) adults and evaluate its psychometric properties. This international cross-sectional study was conducted among TGD adults aged 18 years and older who were seeking or had received gender-affirming care within the past 5 years at 21 clinical sites across Canada, the United States, the Netherlands, and Spain; participants were also recruited through community groups (eg, crowdsourcing platform, social media). The study was conducted between February 2022 and March 2024. Participants had to be capable of completing the instrument in English, Danish, Dutch, or French-Canadian. Eligible participants accessed an online REDCap survey to complete sociodemographic questions and questions about gender-affirming care they had received or sought (ie, to look, function, or feel masculine, feminine, gender fluid, or another way). Branching logic was used to assign relevant instrument scales. Rasch measurement theory (RMT) analysis was used to examine the fit of the observed data to the Rasch model for each scale. Test-retest reliability and hypothesis-based construct validity of instrument scales were examined. The hypothesis was that instrument scale scores would increase with better outcomes on corresponding categorical questions. A total of 5497 participants (mean [SD] age, 32.8 [12.3] years; 1837 [33.4%] men; 1307 [23.8%] nonbinary individuals; and 2036 [37.0%] women) completed the field test survey. Participants sought or had the following types of gender-affirming care: 2674 (48.6%) masculinizing, 2271 (41.3%) femininizing, and 552 (10.0%) other. RMT analysis led to the development of 54 unidimensional scales and 2 checklists covering domains of health-related quality of life, sexual, urination, gender practices, voice, hair, face and neck, body, breasts, genital feminization, chest, genital masculinization, and experience of care. Test-retest reliability of the scales (intraclass correlation coefficient [average] >0.70) was demonstrated. Only 1 item (phalloplasty donor flap) had an ICC less than 0.70. As hypothesized, scores increased incrementally with better associated self-reported categorical responses. For example, among 661 participants who reported poor psychological well-being, the mean (SD) scale score was 45 (18) points; for those who reported excellent psychological well-being, the mean (SD) scale score was 85 (16) points (P < .001). In this cross-sectional study of 5497 TGD adults, the instrument demonstrated reliability and validity. The instrument was validated in an international sample and is designed to collect and compare evidence-based outcome data for gender-affirming care from the patients' perspective.
Key Points
- Published in JAMA network open in 2025.
- Indexed in PubMed as PMID 40249619.
- Mapped to Gender-Affirming Surgery, Outcomes, Methods & Education.
- Abstract available from PubMed and rendered as static text on this page.
Clinical Relevance
This publication supports a focused body of work on gender-affirming surgery, including patient-centered outcomes, robotic peritoneal flap vaginoplasty, complications, revisions, and measurement of surgical quality.