Developing a multidisciplinary Young Women's Blood Disorders Program: a single‐centre approach with guidance for other centres. (29th January 2016)

• Record Type: Journal Article
• Authors: Zia, A.; Lau, M.; Journeycake, J.; Sarode, R.; Marshall, J.; De Simone, N.; Wilson, E.; Winborn, A.; Kouides, P.
• Is Part Of: Haemophilia. Volume 22:Number 2(2016:Mar.)
• Page Start: 199
• Page End: 207
• Publication Date: 2016-01-29
• Subjects: abnormal uterine bleeding -- bleeding disorders -- comprehensive care -- heavy menstrual bleeding; Hemophilia -- Periodicals; 616.1572005
• DOI: 10.1111/hae.12836
• Languages: English
• ISSNs: 1351-8216

Abstract

Abstract : Introduction: Bleeding from the reproductive tract in women is a natural event, generally occurring with menstruation and childbirth. Women with an underlying bleeding disorder may experience heavy menstrual bleeding (HMB) and thereby, unacceptable blood loss. Up to 20% of US women with abnormal uterine bleeding and a normal gynaecological exam may have an underlying bleeding disorder corresponding to almost 2–3 million American women. These females face many obstacles in achieving optimum medical care for their problems. A haematologist may not evaluate these women as they are treated symptomatically. Recognition of an underlying bleeding disorder is not straightforward and many come to attention after serious bleeding events. Although mortality from HMB is uncommon, the true burden of HMB is its impact on health‐related quality of life. To address these issues, women with HMB require a comprehensive approach to their care. Methods: These reasons compelled us to institute a multidisciplinary Young Women's Blood Disorders (YWBD) Program at our institution. Results: Herein, we describe the process of developing this program involving paediatric haematology, adolescent medicine and paediatric/adolescent gynaecology, and the expertise of a laboratory coagulationist, a nutritionist and nursing professionals. We also describe our experience with patient selection, the role of each specialty in the program, our approach to testing, the coordination of care and overall management of this patient population. Lastly, we propose metrics that could be followed in justifying the support of such a program. Conclusions: There is a growing need to offer comprehensive care to women with HMB and blood disorders. The YWBD program at our institution appears to be successful in delivering optimal care to young women affected with HMB.