Summary

A critical barrier to outcome assessment in gender-affirming healthcare is the lack of a specific patient-reported outcome measure.
The GENDER-Q is a patient-reported outcome instrument that means to precisely measure outcomes of psychological, hormonal and surgical gender-affirming treatments.

GENDER-Q was created to advance research into gender-affirming care from the patient perspective. It’s modular structure allows for the evaluation of all types of gender-affirming care (e.g., surgery, hormones, speech/voice therapy).
In 2018, Dr. Klassen and Dr. Kaur received funding from the Plastic Surgery Foundation and the Canadian Institutes for Health Research to develop GENDER-Q.
To develop the GENDER-Q, they 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. Important themes from the interviews related to outcomes and experiences of care were used to develop a comprehensive set of GENDER-Q scales (e.g. health-related quality of life, sex, urination, gender practices, voice, hair, breast/chest, etc.).

To establish content validity, GENDER-Q was showed to 50 clinical experts and 14 patient participants. Their feedback was used to refine the GENDER-Q. Both a pilot field test study and an international field test study were conducted and completed.