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

衡量性别发育差异中的医疗护理经历和创伤压力

• 批准号: 10266145
• 负责人: CANICE Ellen CRERAND
• 金额: $ 20.82万
• 依托单位: RESEARCH INST NATIONWIDE CHILDREN'S HOSP
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-09-17 至 2023-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10266145
• 关键词: Address; Adult; Age; Anxiety; Birth; Caregivers; Caring; Cataloging; Childhood; Clinical; Clinical Management; Communication; Communities; Consent; Data; Decision Making; Depression and Suicide; Development; Diagnosis; Distress; Ensure; Ethics; Exhibits; Family; Fertility; Foundations; Functional disorder; Gender; Gender Identity; Generations; Genetic; Genital; Genitalia; Goals; Heterogeneity; Human Rights; Impairment; Incidence; Individual; Infertility; Intersex; Intervention; Link; Measurement; Measures; Medical; Mental Health; Methods; Modeling; National Institute of Child Health and Human Development; Operative Surgical Procedures; Outcome; Parents; Patient Self-Report; Patient-Centered Care; Patients; Personal Satisfaction; Phenotypic Sex; Photography; Population; Property; Provider; Psychometrics; Psychosocial Assessment and Care; Puberty; Reaction; Recording of previous events; Reporting; Research; Risk; Science; Services; Sexual Dysfunction; Sexual and Gender Minorities; Standardization; Test Result; Testing; Time; Trauma; Underserved Population; United Nations; United States; United States National Institutes of Health; Voice; Vulnerable Populations; Youth; base; care preference; care providers; cognitive interview; community based participatory research; coping; cultural competence; experience; genital surgery; health disparity; high risk; improved; improved outcome; infancy; instrument; medical specialties; novel; patient oriented; personalized care; preference; psychologic; psychosocial; recruit; research and development; resilience; response; satisfaction; sex development disorder; stress symptom; tool; trauma symptom; traumatic stress; urologic; young adult

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.

项目总结/摘要 性别发育差异（DSD）是一种异质性条件， 在出生时或青春期通过非典型发育而明显的遗传性、性腺性或表型性。DSD姿势 独特的临床管理和心理社会挑战，包括生育能力、性和 泌尿系统功能，非典型生殖器，性别认同与养育性别不一致的发生率增加， 有时，关于性腺切除术和/或生殖器手术的争议，这些手术通常在婴儿期进行 在患有DSD的个人可以参与决策或提供同意之前。患有抑郁症的人士， 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 人们对医疗保健经验与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，但医疗护理仍然存在变数和争议， 缺乏数据来指导经验支持的医疗和心理社会护理实践。一些个人 患有DSD的人报告了与他们的医疗护理有关的毁灭性经历，包括因缺乏 自主地对主要针对心理社会和非心理社会的医疗干预措施做出关键决定， 医疗目的（例如，生殖器/性别定型手术）和频繁的生殖器医疗 检查和摄影，通常在没有明确传达理由的情况下进行。的重大障碍 了解医疗护理实践，经验，影响，和病人的需求是缺乏任何病人- 针对DSD人群的集中、经验证的工具，以评估这些问题及其关系 包括创伤性应激障碍症状使用基于社区的参与性研究 方法和建立在我们以前的DSD研究的基础上，我们将开发，试点，并建立初步的 心理测量学的一种新的青年自我报告工具，将评估DSD护理相关的偏好，需求， 经验，以及对患有DSD的青少年（11-18岁）心理健康的影响。具体目标包括： 1)召集一个多元化的利益攸关方咨询委员会，由患有残疾人可持续发展的青年、患有残疾人可持续发展的青年的照顾者、 DSD、DSD成人和代表一系列专业的DSD临床医生，以确定 经验和需求以及项目内容识别，以评估医疗护理经验及其影响 2）完善项目的可理解性，内容效度，可接受性/文化能力，以及 通过迭代认知访谈覆盖关键经验; 3）评估初始心理测量 所开发的工具，包括重测信度和收敛和标准效度的属性。我们 总体目标是扩大服务不足、脆弱的儿科患者获得个性化护理的机会， 人口，青年与DSD，通过确定与积极和不良调整相关的医疗护理实践 并提供有针对性的干预措施，以促进福祉。