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Pathways to care and health outcomes among DSD patients

DSD 患者的护理和健康结果途径

基本信息

批准号：
10188574
负责人：
Michael Goodman
金额：
$ 57.28万
依托单位：
EMORY UNIVERSITY
依托单位国家：
美国
项目类别：
财政年份：
2017
资助国家：
美国
起止时间：
2017-09-08 至 2024-05-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/10188574
关键词：
Address Adult Advocate Age Anatomy Area Birth California Caring Case Series Categories Central Nervous System Diseases Child Chromosome abnormality Code Computerized Medical Record Data Data Collection Development Diagnosis Diagnostic Diagnostic Procedure Disease Epidemiology European Evaluation Frequencies Gender Gender Identity General Population Geography Goals Guidelines Health Health Services Research Health Status Healthcare Systems Hypospadias Incidence Individual Integrated Health Care Systems Intersex Karyotype Knowledge Lesion Life Longitudinal Studies Malignant - descriptor Malignant Neoplasms Measures Medical Medical Records Mental Health Methodology Methods Minority Groups NIH Program Announcements Operative Surgical Procedures Outcome Pathology Report Pathway interactions Patient advocacy Patients Pattern Patterns of Care Persons Population Population Heterogeneity Prevalence Procedures Psyche structure Psychosocial Influences Recommendation Registries Research Risk Sample Size Sex Characteristics Sexual Health Sexual and Gender Minorities Site Specimen Surgical complication Text Time Uterus Validation Woman Women&apos s Health Y Chromosome age group ambiguous genitalia base behavioral health cohort comorbidity electronic structure experience follow-up gender dysphoria genital surgery high risk hormone therapy infancy male male health member men multidisciplinary premalignant prophylactic research and development sex sex development disorder socioeconomics surgery outcome transgender

项目摘要

PROJECT SUMMARY/ABSTRACT The goal of this proposal is to develop a longitudinal study of patterns of care and health outcomes among individuals who were diagnosed with disorders of sex development (DSD). We propose a study of DSD patients from three large integrated health care systems (HCS): Kaiser Permanente Southern California (KPSC), Kaiser Permanente Georgia (KPGA), and Kaiser Permanente Mid-Atlantic States (KPMAS). These HCS share similarly structured electronic medical records (EMRs) and represent a geographically, socio- economically, and demographically diverse population of nearly 5 million members. Most methods of data collection described in the current application have been successfully implemented in our recently completed or ongoing studies of transgender people. Applying these methods to the 2006-2015 data at the participating sites, we identified 19,233 patients with “likely DSD” based on diagnoses or keywords in the medical records. In addition, 47,107 individuals were identified as having “possible DSDs” (e.g., non-specified uterine anomalies or hypospadias). The proposed project will address three areas of importance in DSD research: 1) patterns and guideline-concordance of care; 2) controversies in treatment; and 3) comorbidities and long-term health outcomes. We will use validated EMR data to estimate the percentages of confirmed DSD patients who underwent diagnostic workup and received care according to current recommendations. We will examine whether guideline concordant DSD management is associated with health outcomes, such as the need for additional care and behavioral health problems later in life. The often cited area of disagreement is the optimal timing of sex assignment surgery in cases of atypical or ambiguous genitalia with some advocating early procedures and others arguing for a deferral. Another controversial issue is the common practice of a prophylactic gonadectomy for DSD patients whose karyotype includes Y-chromosome material (+Y DSD). We will use relevant KPSC, KPGA, and KPMA diagnostic and procedure codes to identify genital surgery and gonadectomies. Using these data we will assess the association between timing of gender assignment procedures and surgical complications, gender dysphoria, or other health problems later in life. We will also review pathology reports to estimate the frequency and determinants of “positive gonadectomy,” i.e., with evidence of malignant or premalignant lesions. We will then compare measures of health status of DSD patients to the corresponding measures among age- and membership matched non-DSD male and non-DSD female HCS enrollees (reference cohort). We will examine the incidence and prevalence of comorbidities and long-term health outcomes across age groups, categories of DSD conditions, and relative to the matched reference cohort. The proposed project will be carried out by a multidisciplinary team that includes experts in DSD research and care, EMR-based data collection, epidemiology, and evaluation of health services.

项目摘要/摘要这项提案的目标是对以下人群的护理模式和健康结果进行纵向研究被诊断为性发育障碍(DSD)的个人。我们建议对DSD进行研究来自三个大型综合医疗保健系统(HCS)的患者：南加州凯撒永久医院 (KPSC)、乔治亚州(KPGA)和大西洋中部州(KPMAS)。这些 HCS共享类似结构的电子病历(EMR)，并在地理、社会和经济上和人口结构上多样化的近500万成员。大多数数据方法当前应用程序中描述的集合已在我们最近完成的或正在进行的变性人研究。将这些方法应用于2006-2015年的数据在网站上，我们根据诊断或医疗记录中的关键字确定了19,233名“可能的DSD”患者。此外，47,107人被确认患有“可能的DSD”(例如，未指明的子宫异常或尿道下裂)。拟议的项目将解决DSD研究中的三个重要领域：1)模式和指南-护理的一致性；2)治疗中的争议；3)合并症和长期健康结果。我们将使用经过验证的电子病历数据来估计确诊的DSD患者中接受了诊断性检查，并根据当前的建议接受了护理。我们将研究符合指南的DSD管理是否与健康结果相关，例如是否需要晚年的额外护理和行为健康问题。经常被引用的分歧领域是最好的生殖器不典型或不明确病例的性别分配手术时机，一些人主张及早程序和其他主张推迟的人。另一个有争议的问题是对核型为Y染色体材料(+Y DSD)的DSD患者进行预防性性腺切除术。我们将使用相关的KPSC、KPGA和KPMA诊断和程序代码来识别生殖器手术和性腺切除术。使用这些数据，我们将评估性别分配时间之间的关联手术和手术并发症、性别焦虑症或以后生活中的其他健康问题。我们还将回顾病理报告以估计“阳性性腺切除”的频率和决定因素，即有恶性或癌前病变的证据。然后，我们会比较渠务署的健康状况指标年龄和成员匹配的非DSD男性与非DSD患者的相应措施初级保健服务的女性参与者(参考队列)。我们将检查合并症的发生率和流行率，并不同年龄组、不同类型的DSD疾病以及与匹配人群的长期健康结果参考队列。拟议的项目将由一个多学科小组执行，小组成员包括 DSD研究和护理、基于电子病历的数据收集、流行病学和卫生服务评估。