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

基本信息

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
项目类别：
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

项目摘要

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.

项目概要/摘要性发育差异（DSD）是异质条件，涉及性别发育之间的不一致出生时或青春期非典型发育中明显的遗传、性腺或表型性别。 DSD姿势独特的临床管理和社会心理挑战，包括生育能力、性和心理障碍泌尿功能，非典型生殖器，性别认同与抚养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通常在婴儿期进行患有 DSD 的个人可以参与决策或提供同意。患有 DSD 的个人位于存在心理健康问题的风险，包括创伤性应激症状、焦虑、抑郁和自杀倾向，但是人们对医疗护理经历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差异和争议，缺乏数据来指导经验支持的医疗和社会心理护理实践。一些个人 DSD 报告了与他们的医疗护理相关的毁灭性经历，包括因缺乏医疗服务而感到痛苦自主做出关于主要针对心理社会和非心理疾病的医疗干预的关键决定医疗目的（例如，在婴儿期进行的生殖器/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。一个重大障碍了解医疗护理实践、经验、影响和患者需求是缺乏任何患者针对 DSD 人群的集中且经过验证的工具，用于评估这些问题及其关系心理健康，包括创伤性应激症状。使用基于社区的参与性研究方法并以我们之前的 DSD 研究为基础，我们将开发、试点并建立初步的一种新颖的青少年自我报告工具的心理测量学，该工具将评估 DSD 护理相关的偏好、需求、 DSD 青少年（11-18 岁）的经历以及对心理健康的影响。具体目标包括： 1) 召集一个多元化的利益相关者咨询委员会，由DSD青少年、DSD青少年的照顾者组成 DSD、患有 DSD 的成人以及代表一系列专业的 DSD 临床医生，以确定 DSD 的关键领域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关于福祉； 2) 细化项目的可理解性、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历； 3) 评估初始心理测量所开发工具的属性，包括重测可靠性、收敛性和标准有效性。我们的总体目标是扩大服务不足、弱势儿科群体获得个性化护理的机会人口、患有 DSD 的青少年，通过确定与积极和不良调整相关的医疗保健实践并告知有针对性的干预措施以促进福祉。