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

项目总结 性别特征的变异(VST；也称为性别发育差异或双性)是先天的 遗传性、性腺和/或表型性行为不一致的状况。患有VST的青年 通常表现出复杂的临床表现，包括非典型生殖器、独特的性别相关需求(例如， 与解剖差异、性别认同多样性、性/泌尿系统功能障碍和生育有关 减损。跨学科护理是对患有VST的青少年的标准护理，给予相关的医疗、心理 健康和发展护理方面的挑战，通常需要谨慎的临床决策和明确、 协调提供者与青年之间的沟通。许多与VST相关的护理决策在 童年和青春期对性和泌尿生殖功能、生育力、 生活，和心理健康。室上性早搏患者经历心理创伤的风险更高 与她们的护理有关，这通常包括频繁的生殖器检查和高度个人化的性行为--以及 与多个护理提供者有关的性别问题。跨学科护理团队目前缺乏标准化的、 与青年协调的从青年那里获取信息的方式，以帮助指导个性化护理并促进共享 决策。没有经过验证的措施来捕获护理偏好、需求和与护理相关的 患有VST的年轻人的经历，或这些年轻人面临的健康差距，包括组内VST 差异(例如，那些有/没有跨学科护理机会或神经发育障碍的人)。因此， 这项提案建立在NIH资助的三个试点项目的基础上，最终完成了开发、校准和 验证VST自我倡导工具，称为Vista(Variations In Sex Characters Advocacy Tool)，以捕获 青年的需求和偏好以及他们面临的差距。目标1扩展和细化了Pilot Vista项目集 确保关键VST差异亚组(即青年)的项目覆盖率、理解力和文化协调性 有神经发育障碍的人；没有跨学科护理机会的青年)。AIM 2招募600名青年和 患有VST的新兴成年人(11-21岁)，在护理途径、种族认同、性别认同方面取得平衡 多样性和神经发育多样性。量表发展研究程序，包括潜在变量 建模和区分项目功能，将产生在不同青年中公平发挥作用的分量表。 会聚和判别验证将通过心理健康、创伤应激/耻辱、 身体形象，以及患者对共同决策的参与。生态有效性将通过以下方式进行评估 采用混合方法对青年的横纹亚样本进行跟踪访谈。重测信度的评估标准为 一个月。在目标3中，组内VST差异将在种族认同、护理获得 和地理、性别认同多样性和神经多样性，通过序列GLM模型测试 预测者的贡献和预测者之间的交叉性。这项提议代表着关键的一步 通过VST促进对青年的个性化、公平护理。

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.