Factors Influencing Psychosocial Outcomes in Disorders of Sex Development

项目总结/摘要 患有性发育障碍（DSD）的人经常报告对医疗保健的满意度下降， 有患抑郁症和焦虑症等心理共病的风险。虽然目前的指导方针指出， DSD患者的跨学科护理应包括心理社会服务，知识差距限制了能力 医疗保健提供者提供预期指导，促进积极的心理社会结果。更好的 因此，需要了解这些因素，以告知DSD患者的临床管理。 目前的研究网络两个儿科学术网站与专门的跨学科DSD计划， 也可以进入成人医疗中心（全国儿童医院/俄亥俄州州立大学医学中心 中心;波士顿儿童医院/布里格姆妇女医院/马萨诸塞州总医院）。一个混合的- 方法研究设计将被用来调查调解人和主持人的积极成果， 年龄在12-35岁之间的DSD患者。我们将检查诊断相关因素，包括年龄， 与诊断相关的信息首先与个人分享，生育状况和感知生殖器 外观，因为它们与青少年和成人的弹性，心理社会调整和生活质量有关。 我们将检查潜在的诊断相关和发育介质（临床医生的满意度）， 沟通;健康的家庭功能;家庭和同伴的接受;身体形象）和主持人（年龄 诊断;对亲生子女的渴望;性别分配和性别认同之间的一致性） 心理社会结果。我们的目标是开发一个临床上有用的范例，以促进青年的福祉 和患有DSD的年轻人。混合方法的方法还将使我们能够研究与以下方面有关的主题： 特定DSD条件所特有的医学因素，并了解与 提供者，同意和控制医疗保健，家庭动态，生育状况和亲密关系，沿着 发展光谱

PROJECT SUMMARY/ABSTRACT Individuals with disorders of sex development (DSD) often report decreased satisfaction with health care and are at risk for psychological comorbidities including depression and anxiety. While current guidelines state that the interdisciplinary care of DSD patients should include psychosocial services, knowledge gaps limit the ability of healthcare providers to provide anticipatory guidance and promote positive psychosocial outcomes. A better understanding of these factors is therefore needed to inform the clinical management of patients with DSD. The current study networks two pediatric academic sites with dedicated interdisciplinary DSD programs, both with access to adult medical centers as well (Nationwide Children's Hospital/The Ohio State University Medical Center; Boston Children's Hospital/Brigham and Women's Hospital/Massachusetts General Hospital). A mixed- methods research design will be used to investigate mediators and moderators of positive outcomes in individuals with DSD ages 12-35 years. We will examine diagnosis-related factors, including age at which diagnosis-related information was first shared with the individual, fertility status, and perceived genital appearance as they relate to resilience, psychosocial adjustment, and quality of life in adolescents and adults. We will examine potential diagnosis-related and developmental mediators (satisfaction with clinician communication; healthy family functioning; family and peer acceptance; body image) and moderators (age of diagnosis; desire for biological children; congruence between gender assignment and gender identity) of psychosocial outcomes. Our goal is to develop a clinically useful paradigm for fostering well-being in youth and young adults with DSD. The mixed-methods approach will also enable us to examine themes related to medical factors unique to specific DSD conditions, and to understand nuanced aspects of interactions with providers, consent and control over medical care, family dynamics, fertility status, and intimacy along the developmental spectrum.