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: 9134181
• 负责人: SARAH H. OBRIEN
• 金额: $ 8.97万
• 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 2018-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9134181
• 关键词: Adolescent; Advocacy; Age; American; Area; Blood Coagulation Disorders; Caring; Characteristics; Clinical; Data; Databases; Diagnosis; 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; diagnostic screening; high risk; improved; medical specialties; patient registry; population based; prevent; reproductive; reproductive morbidity; reproductive tract; 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.



项目成果

Steroid-modulated stromal cell tissue factor expression: a model for the regulation of endometrial hemostasis and menstruation.

类固醇调节的基质细胞组织因子表达：子宫内膜止血和月经调节的模型。

• DOI: 10.1210/jcem.77.4.8408448
• 发表时间: 1993
• 期刊: The Journal of clinical endocrinology and metabolism
• 作者: Lockwood,CJ;Nemerson,Y;Krikun,G;Hausknecht,V;Markiewicz,L;Alvarez,M;Guller,S;Schatz,F
• 通讯作者: Schatz,F

Laboratory monitoring during pregnancy and post-partum hemorrhage in women with von Willebrand disease.

患有冯维勒布兰德病的妇女怀孕期间和产后出血的实验室监测。

• DOI: 10.1111/jth.14696
• 发表时间: 2020
• 期刊: Journal of thrombosis and haemostasis : JTH
• 作者: O'Brien,SarahH;Stanek,JosephR;Kaur,Dominder;McCracken,Katherine;Vesely,SaraK
• 通讯作者: Vesely,SaraK