To advance research into gender-affirming care from the patient perspective, a specific and comprehensive patient-reported outcome measure (PROM) is urgently needed. This PROM should be modular in structure to provide a means to evaluate outcomes for all types of gender-affirming care (e.g., surgery, hormones, speech/voice therapy). Ideally, a new PROM should be developed using a modern psychometric approach to enable its use to inform clinical practice, improve care quality and advance research. In 2018, our team received funding from the Plastic Surgery Foundation and the Canadian Institutes for Health Research to develop such a PROM, which is called the GENDER-Q. Our program of research has the following 4 aims:
- To elicit concepts for the GENDER-Q in a qualitative study
- To field test the GENDER-Q in an international study
- To examine the ability of the GENDER-Q to measure clinical change
- To evaluate the use of the GENDER-Q in clinical care
To develop the GENDER-Q, we used the life stories of 84 transgender and gender diverse people who were seeking or had undergone some form of gender-affirming treatment. Participants were recruited from Canada, Denmark, the Netherlands and the USA. The data analysis led to the development of a framework covering the most important concepts for measuring outcomes of gender-affirming care from the patient perspective. The GENDER-Q conceptual framework is shown below. Important themes from the interviews related to outcomes and experiences of care were used to develop a comprehensive set of GENDER-Q scales. To establish content validity, we showed the GENDER-Q to 50 clinical experts and 14 patient participants. We used their feedback to refine the GENDER-Q. We then conducted a pilot field test study with a sample of 511 gender diverse research participants in the Prolific platform. The GENDER-Q international field test study is now underway.