Measuring Medical Care Experiences and Traumatic Stress in Differences of Sex Development

项目摘要/摘要 性别发展差异(DSD)是一种异质性的情况，涉及到 遗传的、性腺的或表型的性别在出生时或在青春期通过不典型的发育而明显。DSD姿势 独特的临床管理和心理社会挑战，包括生育、性和心理障碍 泌尿功能、生殖器不典型、性别认同与养育性别不一致的发生率增加， 有时，关于性腺切除和/或生殖器手术的争议，通常是在婴儿时期进行的 在患有DSD的个人能够参与决策或提供同意之前。患有DSD的个人可在 精神健康问题的风险，包括创伤应激症状、焦虑、抑郁和自杀，但 人们对医疗经历和心理健康之间的关系知之甚少。虽然 目前建议对DSD进行跨学科护理，医疗护理仍然存在变数和争议， 缺乏数据来指导有经验支持的医疗和心理社会护理实践。有些人 DSD报告了与他们的医疗护理相关的毁灭性经历，包括因缺乏 对主要针对心理社会和非心理社会的医疗干预做出关键决定的自主权 医疗目的(例如，在婴儿期进行生殖器/性别分类手术)和频繁的生殖器医疗 考试和摄影，通常是在没有明确沟通理由的情况下进行的。一个重要的障碍是 了解医疗实践、体验、影响和患者需求是缺乏任何患者- 针对DSD人群的集中、经过验证的工具，以评估这些问题及其关系 精神健康，包括创伤应激症状。使用以社区为基础的参与性研究 在我们之前的DSD研究的基础上，我们将开发、试点和建立初步的 一种新的青少年自我报告工具的心理测量学，该工具将评估与DSD护理相关的偏好、需求 精神障碍青少年(11-18岁)的经历及其对心理健康的影响。具体目标包括： 1)召集一个不同的利益攸关方咨询委员会，由具有可持续发展部的青年、具有 DSD、患有DSD的成年人以及代表一系列专科的DSD临床医生，以确定关键领域 体验和需求和项目内容识别，以评估医疗体验及其影响 关于幸福感；2)提炼项目的可理解性、内容有效性、可接受性/文化能力，以及 通过迭代认知访谈覆盖关键经验；以及3)评估初始心理测量学 所开发工具的性质，包括重测信度、收敛效度和效标效度。我们的 首要目标是扩大在服务不足、脆弱的儿科医生中获得个性化护理的机会 通过确定与积极和不良适应相关的医疗保健做法，为患有DSD的人口、青年提供支持 并为促进福祉提供量身定做的干预措施。

PROJECT SUMMARY/ABSTRACT Differences of sex development (DSD) are heterogeneous conditions that involve discordance between genetic, gonadal, or phenotypic sex evident at birth or through atypical development during puberty. DSD pose unique clinical management and psychosocial challenges, including impairments to fertility, sexual and urological function, atypical genitalia, increased incidence of gender identity incongruent with gender of rearing, and at times, controversies about gonadectomy and/or genital surgery, which are often performed in infancy before individuals with DSD can participate in decision-making or provide consent. Individuals with DSD are at risk for mental health problems, including traumatic stress symptoms, anxiety, depression, and suicidality, but little is known about relationships between medical care experiences and mental health. Although interdisciplinary care is currently recommended for DSD, medical care remains variable and controversial, with a paucity of data to guide empirically supported medical and psychosocial care practices. Some individuals with DSD report devastating experiences related to their medical care including distress over a lack of autonomy to make critical decisions about medical interventions performed for primarily psychosocial and non- medical purposes (e.g., genital/gender-typifying surgeries performed in infancy) and frequent genital medical exams and photography, often performed without clearly communicated rationales. A significant barrier to understanding medical care practices, experiences, impacts, and patient needs is the lack of any patient- centered, validated instruments specific to the DSD population to assess these issues and their relationships with mental health, including traumatic stress symptoms. Using a community-based participatory research approach and building on the foundation of our prior DSD research, we will develop, pilot, and establish initial psychometrics for a novel youth self-report instrument which will assess DSD care-related preferences, needs, experiences, and impacts on mental health among youth with DSD (ages 11-18 years). Specific aims include: 1) Convening a diverse Stakeholder Advisory Board consisting of youth with DSD, caregivers of youth with DSD, adults with DSD, and DSD clinicians representing a range of specialties to identify key domains of experiences and needs and item content identification to evaluate medical care experiences and their impacts on well-being; 2) Refining items for comprehensibility, content validity, acceptability/cultural competence, and coverage of key experiences through iterative cognitive interviewing; and 3) Evaluating initial psychometric properties of the developed instrument, including test-retest reliability and convergent and criterion validity. Our overarching objective is to expand access to personalized care in an underserved, vulnerable pediatric population, youth with DSD, by identifying medical care practices associated with positive and poor adjustment and informing tailored interventions to promote well-being.