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Co-Development and Validation of a Patient-Reported Experience Measure for Trans and Gender Diverse Young People: A
Sasha Bailey1,2, Isabel Zbukvic1,2, Alex Dalton2
1Centre for Youth Mental Health, The University of Melbourne, Parkville, Victoria, Australia.
Summary
This study co-develops a patient-reported experience measure (PREM) for trans and gender diverse youth to improve healthcare quality. The validated PREM will assess affirming care experiences for young people aged 12-25.
Area of Science:
- Health Services Research
- Adolescent Health
- Gender-Affirming Care
Background:
- Trans and gender diverse (trans) youth face significant health disparities due to gender minority stress.
- Existing patient-reported experience measures (PREMs) are inadequate for capturing the healthcare experiences of trans youth, particularly those with intersecting marginalized identities.
- Negative healthcare experiences are common among trans youth, highlighting the need for improved assessment tools.
Purpose of the Study:
- To co-develop and validate a novel PREM tailored to the unique healthcare needs and experiences of trans and gender diverse young people aged 12-25.
- To ensure the PREM captures the affirming aspects of healthcare across all identity facets for trans youth.
- To enhance the quality of health and mental healthcare services utilized by trans youth.
Main Methods:
- A co-production framework guided the four-stage study, involving a Lived Experience Advisory Group (LEAG) of trans youth.
- Scoping review of qualitative studies, semi-structured interviews with multiply marginalized trans youth (n=30) and healthcare professionals (n=30).
- Modified e-Delphi consensus survey (n=90) with trans youth, healthcare professionals, and parents/caregivers, followed by cognitive debriefing focus groups (n=14) with trans youth.
Main Results:
- The study successfully co-produced and validated a comprehensive PREM designed for trans and gender diverse youth.
- The developed PREM effectively measures the quality of healthcare experiences from the perspective of trans youth.
- Initial validation indicates the PREM's relevance and inclusivity for diverse trans youth populations.
Conclusions:
- A new, validated PREM will enable effective measurement of healthcare quality for trans and gender diverse youth.
- The PREM will be implemented in integrated youth health services for quality improvement initiatives.
- This work supports the evaluation of integrated gender service models and promotes affirming care for trans youth.
Keywords:
Trans and gender diverseadole scentshealthcare experiencehealthcare qualityparticipatory methodspatient‐reported experience measureMore Related Videos
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