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

公平衡量双性青少年/性发育差异青少年的护理差异和需求

基本信息

批准号：
10802992
负责人：
CANICE Ellen CRERAND
金额：
$ 82.41万
依托单位：
CHILDREN'S RESEARCH INSTITUTE
依托单位国家：
美国
项目类别：
财政年份：
2023
资助国家：
美国
起止时间：
2023-09-25 至 2028-06-30
项目状态：
未结题

来源：
https://reporter.nih.gov/project-details/10802992
关键词：
Address Adolescence Adult Advocacy Advocate Age Anatomy Body Image Calibration Caring Childhood Clinic Clinical Clinical Research Collaborations Communication Communities Complex Comprehension Decision Making Development Disparity Disparity population Distress Ensure Equity Exhibits Exposure to Face Factor Analysis Fertility Functional disorder Funding Gender Gender Identity Genetic Genital Genitalia Genitourinary system Geography Goals Health Health Services Accessibility Healthcare Impairment Individual Intersex Interview Measurement Measures Medical Mental Health Methods Minority Modeling National Institute of Child Health and Human Development National Institute on Minority Health and Health Disparities Neurodevelopmental Disability Operative Surgical Procedures Parents Patient Self-Report Personal Satisfaction Persons Phenotypic Sex Pilot Projects Procedures Process Provider Psychometrics Psychosocial Assessment and Care Quality of life Recommendation Reporting Research Risk Sampling Science Sexual Development Standardization Structure Subgroup Testing Torture United Nations United States National Institutes of Health Validation Validity and Reliability Variant Voice Youth care preference care providers clinical care clinical decision-making cognitive interview coping design emerging adult emerging adulthood ethnoracial experience follow-up gender minority gender minority health disparity health disparity health disparity populations intersectionality marginalization neglect patient engagement personalized care preference prototype psychologic psychological trauma psychosocial recruit research and development response sex sex development disorder shared decision making social stigma standard of care tool trait traumatic stress urologic

项目摘要

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.

项目概要性别特征变异（VST；也称为性别发育差异或间性）是先天性的以遗传、性腺和/或表型性别之间不一致为特征的病症。 VST青年经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，与解剖学差异、性别认同多样性有关）、性/泌尿功能障碍和生育能力损害。跨学科护理是对 VST 青少年的护理标准，考虑到相关的医疗、心理健康和发育护理挑战，通常需要仔细的临床决策和明确的、协调提供者和青年之间的沟通。许多与 VST 相关的护理决定是在童年和青春期对性和泌尿生殖功能、生育能力、性功能质量具有终生影响生活、心理健康。患有 VST 的人经历心理创伤的风险更高与他们的护理有关，通常包括频繁的生殖器检查和高度个人化的性和性别讨论多个护理提供者的性别相关问题。跨学科护理团队目前缺乏标准化、适合青年的方式，从青年那里获取信息，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捉护理偏好、需求和护理相关的信息青少年 VST 经历，或这些年轻人面临的健康差异，包括群体内 VST 差异（例如，有/没有跨学科护理或神经发育障碍的人）。所以，该提案以 NIH 资助的三个试点项目为基础，最终确定了开发、校准和验证 VST 自我倡导工具，称为 VISTA（性特征倡导工具的变化），以捕获青年人的需求和偏好以及他们面临的差异。 AIM 1 扩展并完善了 VISTA 试点项目集确保主要 VST 差异亚群体（即青少年）的项目覆盖、理解和文化协调患有神经发育障碍；无法获得跨学科护理的青少年）。 AIM 2 招募 600 名青年和患有 VST 的新兴成年人（11-21 岁），在护理获取、民族种族认同、性别认同方面保持平衡多样性和神经发育多样性。量表开发研究程序，包括潜在变量建模和差异项目功能将产生在不同青年中公平发挥作用的子量表。将通过心理健康、创伤压力/耻辱、身体形象以及患者参与共同决策。生态有效性将通过以下方式进行评估：混合方法对青年的条纹子样本进行后续访谈。重测可靠性将在一个月。在 AIM 3 中，将审查族裔种族身份、护理获取方面的群体内 VST 差异以及地理、性别认同多样性和神经多样性，通过序列 GLM 模型测试预测变量的贡献和预测变量之间的交叉性。该提案代表了关键的一步通过 VST 促进为青少年提供个性化、公平的护理。