Abstract
BACKGROUND: Improving access to medical transition for transgender and gender diverse (TGD) individuals is a priority, which requires data on the experience of medical transition during and after the process. However, no Patient-Reported Experience Measurement (PREM) questionnaire has been developed specifically for this population until now in the French context. The primary objective was to provide preliminary evidence of the psychometric properties regarding validity and reliability of the PREMIUM questionnaires among TGD individuals undergoing medical transition. The secondary objectives were to explore the relationships between different dimensions of the care experience during medical transition with socio-demographic and clinical characteristics. METHODS: A national web survey was conducted from 2021 to 2022 including a set of PREMIUM questionnaires measuring respect and dignity, information received, access and care coordination, interpersonal relationships with providers and psychotherapy. Reliability was assessed using Cronbach's alpha and corrected item-total correlations, and construct validity was assessed through exploratory factor analyses (EFA). Univariable and multivariable logistic regressions were used to assess the association between self-reported experience with sociodemographic and clinical data. RESULTS: A total of 168 individuals participated in the study, revealing through PREMIUM questionnaires critical areas for enhancement: informational gaps on initiatives and peer support, care access and coordination challenges marked by appointment delays and repetitive medical histories, respect and dignity concerns highlighted by intrusive questions and insufficient information, as well as deficiencies in interpersonal relationships with providers, evidenced by inadequate therapeutic alliance, encouragement for emotional expression, and limited provider engagement. Additionally, the psychotherapy domain indicated a need for improved availability, choice, and effectiveness of services. The psychometric properties of the questionnaires were satisfactory with high Cronbach's alpha coefficients (> 0.70) and adequate corrected item-total correlations (≥ 0.30). The EFA results showed that the questionnaires were essentially unidimensional. An initial consultation with a surgeon and being older at the initial consultation were associated with a better care experience. In contrast, higher educational level, an initial consultation in a private practice, with an endocrinologist, were associated with a poorer care experience. CONCLUSIONS: This survey highlighted key areas for improving the experience of medical transition for TGD individuals in France. Systematic use of PREMIUM-TRANS questionnaires could enable tracking of experience-related parameters over time, providing useful insights for providers and policymakers.