Equitable Measurement of Care Disparities and Needs in Intersex Youth/Youth with Variations in Sex Development

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PROJECT SUMMARY Variations in sex traits (VST; also known as differences of sex development or Intersex) are congenital conditions characterized by incongruence between genetic, gonadal, and/or phenotypic sex. Youth with VST often exhibit complex clinical presentations, including atypical genitalia, unique gender-related needs (e.g., related to anatomical differences, gender identity diversity), sexual/urological dysfunction, and fertility impairment. Interdisciplinary care is the standard of care for youth with VST given interrelated medical, mental health, and developmental care challenges which typically demand careful clinical decision-making and clear, coordinated communication between providers and youth. Many VST-related care decisions made during childhood and adolescence have life-long implications for sexual and urogenital functioning, fertility, quality of life, and mental health. Individuals with VST are at heightened risk for experiencing psychological trauma related to their care which often includes frequent genital exams and discussions of highly personal sex- and gender-related concerns with multiple care providers. Interdisciplinary care teams currently lack a standardized, youth-attuned means of obtaining information from youth to help guide personalized care and facilitate shared decision-making. There are no validated measures to capture the care preferences, needs, and care-related experiences of youth with VST, or the health disparities these young people face, including intragroup VST disparities (e.g., those with/without interdisciplinary care access or neurodevelopmental disability). Therefore, this proposal, which builds on three NIH-funded pilot projects, finalizes the development, calibration, and validation of a VST self-advocacy tool, called the VISTA (Variations in Sex Traits Advocacy Tool), to capture youth needs and preferences and the disparities they face. AIM 1 expands and refines the pilot VISTA itemset to ensure item coverage, comprehension, and cultural attunement for key VST disparity subgroups (i.e., youth with neurodevelopmental disability; youth without interdisciplinary care access). AIM 2 recruits 600 youth and emerging adults with VST (ages 11-21), balanced across care access, ethno-racial identity, gender identity diversity, and neurodevelopmental diversity. Scale development research procedures, including latent variable modeling and differential item functioning, will produce subscales that function equitably across diverse youth. Convergent and discriminant validation will be tested with measures of mental health, traumatic stress/stigma, body image, and patient engagement in shared decision-making. Ecological validity will be evaluated with mixed methods follow-up interviews in a striated subsample of youth. Test-retest reliability will be assessed at one month. In AIM 3, within-group VST disparities will be examined across ethno-racial identity, care access and geography, gender identity diversity, and neurodiversity through sequential GLM models testing the contributions of predictors and intersectionality between predictors. This proposal represents a critical step towards facilitating personalized, equitable care for youth with VST.