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.
Although van Willebrand disease (VWD) is one of the most common bleeding disorders in women, with an estimated prevalence of 1.6 million American women, the quality of reproductive care in women at risk for VWD or with diagnosed VWD has been poorly studied. This research utilizes a large administrative health claims database to investigate gaps in care with regards to current expert recommendations, such as screening for VWD in women with heavy menses and prior to hysterectomy, and monitoring van Willebrand factor levels during pregnancy to prevent postpartum hemorrhage. The results of this research will inform targeted educational and advocacy efforts to improve 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.
