D151. The Gender-Q: A Rigorous, Modular, Patient-reported Outcome Measure For Gender-affirming Care

Abstract

Listen

Translate article

PURPOSE: To develop a comprehensive, rigorous PROM to assess outcomes of gender-affirming care in clinical practice, research, and quality initiatives (the GENDER-Q) METHODS: A mixed-methods, multiphase approach was used. In phase 1, in-depth interviews were conducted with adults seeking gender-affirming care from 4 countries (US, Canada, Denmark, Netherlands). Data were analyzed and used to develop a conceptual framework and item pool, which was used to develop preliminary scales. Iterative feedback was sought from clinicians and patients on the scales, and used to refine/develop new scales. The scales were pilot-tested using a crowd-sourcing platform. RESULTS: Data from interviews with 84 transgender and gender diverse adults (34±14years) resulted in 42 preliminary scales that were developed covering the concepts in the conceptual framework. Feedback from 50 clinicians and patient participants (n=7 to 14, depending on scale) was used to refine and develop 15 new scales, resulting in 55 scales in the field test version. Pilot-test was completed (n=602) and used to make minor changes to the GENDER-Q (e.g., drop items). CONCLUSION: The GENDER-Q was developed using extensive input from TGD individuals and clinician experts and represents the most comprehensive set of independently functioning, unidimensional scales that are available to-date. Phase 2 involves an international field-test (currently underway; n=1900), following which the scales will be made available at no charge for academic and clinical research.