Quality of Reproductive Care in Women with Von Willebrand Disease

患有冯维勒布兰德病的女性的生殖护理质量

基本信息

批准号：
8956508
负责人：
SARAH H. OBRIEN
金额：
$ 10.21万
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：
2015
资助国家：
美国
起止时间：
2015-09-01 至 2017-06-30
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/8956508
关键词：
Adolescent Advocacy Age American Area Caring Characteristics Clinical Data Databases Diagnosis Diagnostic Disease Early Diagnosis Evaluation Frequencies Funding Future Goals Guidelines Health Health Services Accessibility Healthcare Healthy People 2020 Hemophilia A Hemorrhage Hemostatic function Hysterectomy Institution Insurance Intervention Intervention Studies Iron deficiency anemia Lead Menstruation Monitor Morbidity - disease rate National Heart, Lung, and Blood Institute Operative Surgical Procedures Patients Plasma Population Heterogeneity Postpartum Hemorrhage Pregnancy Pregnant Women Prevalence Quality of Care Quality of life Recommendation Reproductive Health Research Risk Specialist Third Pregnancy Trimester Thrombosis Time United States Woman Work accurate diagnosis aged base high risk improved medical specialties patient registry population based prevent public health relevance reproductive reproductive morbidity screening treatment center von Willebrand Disease

项目摘要

DESCRIPTION (provided by applicant): Approximately 2 million women (-1% of all women) in the United States may have an undiagnosed bleeding disorder, yet many of these disorders remain undetected for years or are never diagnosed. Women with bleeding disorders are at increased risk for heavy menstrual bleeding, iron deficiency anemia, antepartum bleeding, postpartum hemorrhage, and may undergo unnecessary hysterectomy and other uterine surgeries that can lead to additional complications. A common bleeding disorder in women is von Willebrand disease (VWD), defined as a quantitative or qualitative deficiency of von Willebrand factor. To decrease the frequency and morbidity of complications from undiagnosed VWD, expert guidelines recommend screening for VWD in adolescents with heavy menses and prior to any hysterectomy for heavy menses. For pregnant women with diagnosed VWD, third trimester monitoring of VWF is recommended to best plan for a safe labor and delivery and reduce the risk of postpartum hemorrhage. Although VWD is a common disease, with an estimated prevalence of 1.6 million American women, past research in this area has been primarily limited to single institution settings or patient registries derived from hemophilia treatment centers. Women with milder disease or limited access to treatment centers are therefore underrepresented. Our long-term goal is to perform research that aids in decreasing the frequency and morbidity of reproductive bleeding in women with underlying bleeding disorders. Utilizing administrative claims data to study bleeding complications in women with VWD will provide our team unique access to a large and diverse population of women diagnosed with VWD, including those with mild disease. In the proposed study we will utilize the ClinformaticsDataMart, a longitudinal health care database representing >45 million covered lives (including >7,000 reproductive-aged women with VWD), to investigate the quality of reproductive health care in women with VWD during the time period of 2000-2013. The specific aims of our proposal are to: 1) investigate the impact of distance to hemophilia treatment centers and other patient and facility characteristics on the frequency of VWD screening in adolescents with heavy menses and women undergoing hysterectomy for excessive bleeding, and 2) identify the population-based frequency and timing of postpartum hemorrhage, and compare the frequency of postpartum hemorrhage in women with VWD or do and do not undergo third trimester VWF monitoring. Identifying gaps in reproductive care in women with diagnosed VWD and those at risk for VWD will allow for targeted educational and advocacy efforts, and improved implementation of interventions to mitigate the consequences of VWD in reproductive-age women and eliminate barriers to high quality care. Our research seeks to identify barriers to implementation of the NHLBI's and other expert guidelines regarding the evaluation and management of VWD, and supports the Healthy People 2020 goal to increase the proportion of women with VWD who receive a timely and accurate diagnosis.

描述（由适用提供）：美国约有200万妇女（占所有妇女的-1％）可能患有未发现的出血疾病，但这些疾病中的许多疾病多年来一直未被发现或从未被诊断出。患有出血疾病的妇女的月经出血，铁缺乏性贫血，抗癌出血，产后出血的风险增加，可能会接受不必要的子宫切除术和其他可能导致其他并发症的子宫手术。女性常见的出血疾病是冯·威勒疾病（VWD），定义为von Willebrand因素的定量或定性缺陷。为了降低未经诊断的VWD并发症的频率和发病率，专家指南建议在重月期和任何子宫切除术之前对青少年进行VWD筛查。对于患有诊断VWD的孕妇，建议对VWF进行第三个孕期监测，以最佳计划进行安全劳动和分娩，并降低产后出血的风险。尽管VWD是一种常见疾病，估计患病率为160万美国妇女，但该领域的过去研究主要仅限于单一机构环境或来自血友病治疗中心的患者注册。因此，患有米勒病或有限进入治疗中心的妇女的代表性不足。我们的长期目标是进行研究，有助于降低潜在出血疾病的女性生殖出血的频率和发病率。利用行政索赔数据研究VWD女性的出血并发症，将为我们的团队提供独特的访问权限，以访问众多被诊断为VWD的妇女，包括患有轻度疾病的女性。在拟议的研究中，我们将利用ClinformaticsDatamart，这是一个纵向卫生保健数据库，代表4500万覆盖了现场直播（包括> 7,000名具有VWD的生殖妇女），调查2000 - 2013年期间VWD女性生殖保健的质量。我们建议的具体目的是：1）调查距离血友病中心的距离以及其他患者和设施特征对沉重月经的青少年和妇女进行过度出血的妇女的VWD筛查频率的影响，以及2）确定妇女的频率和妇女的频率以及邮政的频率以及邮政的频率和时间的频率，或者是伴随的频率，或者是在三分之三的频率上进行的，或者是伴随的频率。孕药VWF监控。确定有诊断为VWD和有VWD风险的女性生殖护理的差距将允许有针对性的教育和倡导工作，并改善了实施干预措施，以减轻VWD在生殖时代妇女中的后果，并消除高质量护理的障碍。我们的研究旨在确定实施有关VWD评估和管理的NHLBI和其他专家指南的障碍，并支持健康的人2020目标，以增加接受及时，准确诊断的VWD女性比例。