Development of a Patient-Reported Outcome Measure for Youth Receiving Gender-Affirming Care: The GENDER-Q Youth...

Area of Science:

• Adolescent Health
• Psychometrics
• Gender-Affirming Care

Background:

• Patient-reported outcome measures (PROMs) are crucial for assessing the impact of healthcare interventions.
• Youth receiving gender-affirming care require specialized tools to evaluate their health and well-being.
• Existing measures may not adequately capture the unique experiences of this population.

Purpose of the Study:

• To develop and establish the content validity of the GENDER-Q Youth, a novel PROM for adolescents undergoing gender-affirming care.
• To create a comprehensive instrument reflecting key domains relevant to youth's experiences in gender-affirming care.
• To ensure the measure is acceptable and understandable to the target population.

Main Methods:

• Mixed-methods approach including concept elicitation interviews with youth (n=47, ages 12-19).
• Development of a conceptual framework and scales, refined by expert (n=33) and youth (n=17) input.
• Pilot testing with a larger youth sample (n=406, ages 18-25) to assess psychometric properties and content validity.

Main Results:

• A conceptual framework with four domains: quality of life, gender practices, voice, and experience of care.
• Development of 17 scales (292 items) refined to 16 scales (248 items) for the field test version.
• Pilot testing indicated GENDER-Q Youth was understandable, thorough, respectful, safe, and empowering for youth.

Conclusions:

• Content validity of the GENDER-Q Youth was established through extensive input from youth and experts.
• The GENDER-Q Youth is a valid and acceptable patient-reported outcome measure for assessing the experiences of youth receiving gender-affirming care.
• This measure will facilitate better understanding and evaluation of gender-affirming care for adolescents.