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

• 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
• 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

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.

项目摘要 性别特征的差异（VST;也称为性别发育差异或间性）是先天性的 以遗传、性腺和/或表型性别之间的不一致为特征的病症。青少年VST 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， 与解剖学差异、性别认同多样性相关）、性/泌尿功能障碍和生育能力 损伤跨学科护理是对VST青少年的护理标准， 健康和发育护理挑战，通常需要仔细的临床决策和明确的， 协调供应商和青年之间的沟通。许多与VST相关的护理决定在 儿童期和青春期对性和泌尿生殖功能、生育能力、 生活和心理健康。VST患者经历心理创伤的风险更高 与他们的护理有关，这通常包括频繁的生殖器检查和高度个人化的性讨论， 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， 以适合青年的方式从青年那里获得信息，以帮助指导个性化护理并促进共享 决策的没有经过验证的措施来捕获护理偏好、需求和护理相关 患有VST的年轻人的经历，或这些年轻人面临的健康差异，包括组内VST 不一致（例如，具有/不具有跨学科护理途径或神经发育障碍的患者）。因此，我们认为， 该提案建立在NIH资助的三个试点项目的基础上，完成了开发、校准和 验证VST自我宣传工具，称为VISTA（性别特征宣传工具的变化），以捕捉 青年的需要和偏好以及他们面临的差异。AIM 1扩展并细化了试点VISTA项目集 为了确保项目覆盖率，理解和关键VST差异亚组的文化协调（即，青年 患有神经发育障碍的青少年;没有跨学科护理机会的青少年）。AIM 2招募了600名青年， 新兴成人VST（11-21岁），在护理获得、民族-种族认同、性别认同方面平衡 多样性和神经发育多样性。量表开发研究程序，包括潜变量 建模和差异项目功能，将产生在不同的青年公平运作的分量表。 将采用心理健康、创伤性应激/耻辱、 身体形象和患者参与共同决策。生态有效性将通过 混合方法的后续访谈中的条纹青年的子样本。将在以下时间评估重测信度： 一个月在AIM 3中，将检查组内VST差异，包括民族-种族身份、护理获得 和地理，性别认同多样性和神经多样性，通过序贯GLM模型测试， 预测因子的贡献和预测因子之间的交叉性。这项建议是关键的一步， 促进对VST青年的个性化，公平的护理。