Manraj N. Kaur, Shelby L. Kennedy, Anne F. Klassen, and the GENDER-Q Youth Team
As more transgender and gender-diverse youth seek gender-affirming care, it is clear that their voices need to play a central role in shaping both research and healthcare. Patient-reported outcome measures (PROMs) are one way to ensure that care reflects what matters most to patients. PROMs collect information directly from individuals about their experiences, well-being, and quality of life. However, most PROMs currently used in gender-affirming care were not created with input from transgender and gender-diverse youth, leaving an important gap in the field. Our research set out to address this gap by developing the GENDER-Q Youth, a PROM designed specifically for youth receiving gender-affirming care. By focusing on their unique needs and perspectives, we aim to provide a rigorous and valid instrument that improves how we measure and understand their experiences.
A Collaborative Development Process
To develop the GENDER-Q Youth, we began by interviewing 47 transgender and gender-diverse youth in Canada and the United States. These conversations provided valuable insights into their care experiences and the aspects of gender-affirming care that mattered most to them. Using this input, we drafted the GENDER-Q Youth, which included key concepts such as experience of care (interactions with healthcare teams), gender practices (activities like binding and tucking), health-related quality of life (e.g., school life and psychological well-being), and voice (how voice sounds and voice-related distress). We then sought feedback on the GENDER-Q Youth draft scales from 33 experts, including healthcare providers, researchers, patient partners, and 17 transgender and gender-diverse youth. Their feedback helped refine the draft, ensuring the questions were clear, respectful, and relevant.
Insights from the Pilot Study
In addition to qualitative interviews, we conducted a pilot study to evaluate the psychometric performance of the GENDER-Q Youth. This study included 406 transgender and gender-diverse youth from six countries (Australia, Canada, Ireland, New Zealand, the United Kingdom, and the United States), who completed an online survey featuring the GENDER-Q Youth. Their responses offered important data that helped us to identify what worked and what needed to change. The feedback was clear: participants found GENDER-Q Youth content to be relevant and respectful. Their input allowed us to modify the PROM further.
What Comes Next
The next step of our research involves testing the GENDER-Q Youth in a large international sample of transgender and gender-diverse youth. The field-test study will allow us to gather more data to examine reliability and validity, finalize the content, and develop scoring algorithms. Once complete, the GENDER-Q Youth will be made available to healthcare providers and researchers, enabling them to better capture the experiences of youth in gender-affirming care.
Why This Matters
The GENDER-Q Youth represents an important step forward in making gender-affirming care more inclusive and patient-centered. By amplifying the voices of transgender and gender-diverse youth, GENDER-Q Youth will empower them to share their experiences, inform research, and guide healthcare practices. The ISOQOL community may find this work resonates deeply, as it aligns with efforts to use PROMs to advance health equity and improve the quality of life for minoritized populations. More information about the GENDER-Q Youth is available here: https://qportfolio.org/.
This newsletter editorial represents the views of the author and does not necessarily reflect the views of ISOQOL.
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The International Society for Quality of Life Research (ISOQOL) is a global community of researchers, clinicians, health care professionals, industry professionals, consultants, and patient research partners advancing health related quality of life research (HRQL).
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