Project 422833

Children and youth who are gender-affirming are increasingly seeking acces to transgender health services. Hormone blockers, gender-affirming hormones and transgender surgery can help pediatric patients reduce gender dysphoria. A critical barrier to measuring outcomes for such gender-affirming healthcare is the lack of a patient reported outcome measure (PROM). This Chair Award would be used to cover the development of a PROM for gender-affirming treatment for children and youth. This new PROM (GENDER-Q Kids) will provide a comprehensive set of independently functioning scales that cover concepts such as appearance and health-related quality of life for children aged as young as 8 years. Phase 1 consists of an qualitative study to elicit information about outcomes important to patients. From the analysis, a conceptual framework will be formally defined that covers outcomes of importance. We will also create a pool of items that will inform the development of scales. Scales will be refined through cognitive patient interviews and expert input. In Phase 2, preliminary scales will be administered to a large international sample of children and youth. The modern psychometric method of Rasch analysis will be used to shorten and define the measurement properties for each scale. At this stage the GENDER-Q Kids will be ready for use and made available to researchers, providers, administrators and payers to collect meaningful, valid and reliable data on important patient-centered outcomes.