Factors Influencing Psychosocial Outcomes in Disorders of Sex Development

影响性发育障碍心理社会结果的因素

• 批准号: 9193460
• 负责人: CANICE Ellen CRERAND
• 金额: $ 25.58万
• 依托单位: RESEARCH INST NATIONWIDE CHILDREN'S HOSP
• 依托单位国家: 美国
• 财政年份: 2016
• 资助国家: 美国
• 起止时间: 2016-09-12 至 2018-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9193460
• 关键词: Academic Medical Centers; Accounting; Adolescent; Adolescent and Young Adult; Adult; Affect; Age; Anxiety; Appearance; Biological; Body Image; Boston; Caring; Child; Childhood; Clinical Management; Communication; Comorbidity; Consent; Cross-Sectional Studies; Data; Development; Diagnosis; Discipline; Family; Family dynamics; Fertility; Fostering; Foundations; Gender; Gender Identity; General Hospitals; Genital system; Goals; Guidelines; Health Personnel; Healthcare; Hospitals; Individual; Infertility; Intervention; Interview; Knowledge; Massachusetts; Measures; Mediating; Mediator of activation protein; Medical; Medical center; Mental Depression; Methods; Ohio; Operative Surgical Procedures; Outcome; Patient Care; Patients; Pediatric Hospitals; Personal Satisfaction; Population; Provider; Psychiatric Social Work; Psychopathology; Psychosocial Factor; Psychosocial Influences; Qualitative Methods; Quality of life; Reporting; Research; Research Design; Research Personnel; Risk; Site; Socioeconomic Status; Staging; Time; Uncertainty; Woman; Youth; experience; improved; innovation; intimate behavior; outcome prediction; peer; programs; psychologic; psychosocial; psychosocial adjustment; resilience; satisfaction; sex development disorder; young adult

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.

项目概要/摘要 患有性发育障碍 (DSD) 的个体经常报告对医疗保健和护理的满意度下降 面临抑郁和焦虑等心理合并症的风险。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并促进积极的心理社会结果。更好的 因此，需要了解这些因素，以便为 DSD 患者的临床管理提供信息。 当前的研究将两个儿科学术站点网络化，并设有专门的跨学科 DSD 项目， 还可以使用成人医疗中心（全国儿童医院/俄亥俄州立大学医学院） 中心;波士顿儿童医院/布莱根妇女医院/马萨诸塞州总医院）。混合型—— 方法研究设计将用于调查积极结果的中介因素和调节因素 年龄为 12-35 岁的 DSD 患者。我们将检查与诊断相关的因素，包括年龄 首先与个人分享与诊断相关的信息、生育状况和感知的生殖器 外表与青少年和成人的复原力、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展介质（对临床医生的满意度） 沟通;健康的家庭运作；家人和同伴的认可；身体形象）和主持人（年龄 诊断;对亲生孩子的渴望；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种临床上有用的范例，以促进青少年的福祉 以及患有 DSD 的年轻人。混合方法方法还将使我们能够研究与 特定 DSD 状况特有的医疗因素，并了解与 医疗服务提供者的同意和控制、家庭动态、生育状况以及亲密关系 发育谱。