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/摘要该提案的目的是对护理和健康状况模式的纵向研究被诊断为性发展疾病的人（DSD）。来自三个大型综合卫生保健系统（HCS）的患者：Kaiser Permanente南加州（KPSC），Kaiser Permanente Georgia（KPGA）和Kaiser Permanente中大西洋Stes（KPMAS） HCS共享类似结构化的电子病历（EMRS），并代表地理，社会 - 在经济上，人口统计多大的人口近500万。在当前应用程序中描述的收集habe已成功地植入了我们最近的完整或正在进行的跨性别人士的研究。网站，我们根据病历中的诊断或关键字确定了19,233例“可能DSD”的患者。此外，有47,107个人被确定为具有“可能的DSD”（例如，未指定的子宫异常或Hypospadias）。 2）治疗方面的争议；结果。我们将EMR数据估算我们将根据当前的建议进行诊断检查并接受护理指南协调的DSD管理是否与健康结果相关，例如需要以后生活中的其他护理和行为健康问题。在非典型或模棱两可的生殖器的卡斯中，性分配手术的时机与某些倡导地面的时间程序和其他争议的延期是针对核蛋白型的DSD患者的预防性腺切除术包括Y染色体材料（+Y DSD）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 Gonadectomies。程序和手术并发症，性别烦躁不安或其他生活中的其他健康问题审查病理报告，以估算“阳性促性切除术”的自由定价和确定，即与恶性病变或预先病变的证据。年龄和成员资格与非DSD男性非DSD相匹配的Corressponging措施的患者 Femalee HCS参与者（参考队列）。跨年龄段的长期健康结果，DSD条件类别以及相对于匹配参考队列。 DSD研究与护理，基于EMR的数据收集，流行病学和卫生服务评估。