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

• 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
• 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

 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（由申请人提供）：美国约有200万女性（占所有女性的1%）可能患有未诊断的出血性疾病，但其中许多疾病多年未被发现或从未被诊断出来。有出血性疾病的妇女月经大出血、缺铁性贫血、产前出血、产后出血的风险增加，并且可能进行不必要的子宫切除术和其他子宫手术，这些手术可能导致额外的并发症。女性常见的出血性疾病是血管性血友病（VWD），定义为血管性血友病因子的定量或定性缺乏。为了减少未确诊的VWD并发症的发生率和发病率，专家指南建议在月经量大的青少年中进行VWD筛查，并在因月经量大而进行子宫切除术之前进行筛查。对于诊断为VWD的孕妇，建议在妊娠晚期监测VWF，以最好地计划安全分娩和分娩，并降低产后出血的风险。尽管VWD是一种常见疾病，估计有160万美国妇女患病，但过去在这一领域的研究主要限于单一机构设置或血友病治疗中心的患者登记。因此，病情较轻或进入治疗中心的机会有限的妇女人数不足。我们的长期目标是进行研究，帮助降低潜在出血性疾病女性生殖道出血的频率和发病率。利用行政索赔数据来研究VWD女性的出血并发症，将为我们的团队提供独特的途径，以获得大量不同的VWD女性诊断人群，包括那些轻度疾病。在拟议的研究中，我们将利用ClinformaticsDataMart，一个纵向医疗保健数据库，代表超过4500万人的生命（包括超过7,000名育龄女性VWD），调查2000-2013年期间VWD女性的生殖保健质量。我们建议的具体目标是：1）调查与血友病治疗中心的距离以及其他患者和机构特征对月经量大的青少年和因出血过多而接受子宫切除术的女性进行VWD筛查频率的影响，以及2）确定基于人群的产后出血频率和时间，比较VWD妇女与未进行VWF监测的妇女产后出血的频率。查明诊断为VWD的妇女和有VWD风险的妇女在生殖保健方面的差距，将有助于开展有针对性的教育和宣传工作，并改善干预措施的实施，以减轻VWD对育龄妇女的影响，消除获得高质量保健的障碍。我们的研究旨在确定实施NHLBI和其他专家指南关于VWD评估和管理的障碍，并支持2020年健康人的目标，以提高VWD女性的比例，及时准确地诊断。