Surveillance of female patients with inherited bleeding disorders in United States Haemophilia Treatment Centres

Byams, V. R.; Kouides, P. A.; Kulkarni, R.; Baker, J. R.; Brown, D. L.; Gill, J. C.; GRANT, A. M.; James, A. H.; Konkle, B. A.; Maahs, J.; Dumas, M. M.; McAlister, S.; Nance, D.; Nugent, D.; Philipp, C. S.; Soucie, J. M.; Stang, E.

doi:10.1111/j.1365-2516.2011.02558.x

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Surveillance of female patients with inherited bleeding disorders in United States Haemophilia Treatment Centres

7 2011
By Byams, V. R. ; Kouides, P. A. ; Kulkarni, R. ; ...
http://dx.doi.org/10.1111/j.1365-2516.2011.02558.x
Source: Haemophilia. 2011; 17(0 1):6-13

[PDF-164.60 KB]

English

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Details:

Alternative Title:

Haemophilia
Personal Author:

Byams, V. R. ; Kouides, P. A. ; Kulkarni, R. ; Baker, J. R. ; Brown, D. L. ; ... More +

Byams, V. R. ; Kouides, P. A. ; Kulkarni, R. ; Baker, J. R. ; Brown, D. L. ; Gill, J. C. ; GRANT, A. M. ; James, A. H. ; Konkle, B. A. ; Maahs, J. ; Dumas, M. M. ; McAlister, S. ; Nance, D. ; Nugent, D. ; Philipp, C. S. ; Soucie, J. M. ; Stang, E. Less -
Corporate Authors:

Haemophilia Treatment Centres Network Investigators
Description:

Inherited bleeding disorders are especially problematic for affected girls and women due to the monthly occurrence of menstrual periods and the effects on reproductive health. Although heavy menstrual bleeding (HMB) is the most common manifestation, females with inherited bleeding disorders (FBD) experience other bleeding symptoms throughout the lifespan that can lead to increased morbidity and impairment of daily activities. The purpose of this article is to describe the utility of a female-focused surveillance effort [female Universal Data Collection (UDC) project] in the United States Haemophilia Treatment Centres (HTCs) and to describe the baseline frequency and spectrum of diagnoses and outcomes. All FBD aged 2 years and older receiving care at selected HTCs were eligible for enrollment. Demographic data, diagnoses and historical data regarding bleeding symptoms, treatments, gynaecological abnormalities and obstetrical outcomes were analysed. Analyses represent data collected from 2009 to 2010. The most frequent diagnoses were type 1 von Willebrand's disease (VWD) (195/319; 61.1%), VWD type unknown (49/319; 15.4%) and factor VIII deficiency (40/319; 12.5%). HMB was the most common bleeding symptom (198/253; 78.3%); however, 157 (49.2%) participants reported greater than four symptoms. Oral contraceptives were used most frequently to treat HMB (90/165; 54.5%), followed by desmopressin [1-8 deamino-D-arginine vasopressin (DDAVP)] (56/165; 33.9%). Various pregnancy and childbirth complications were reported, including bleeding during miscarriage (33/43; 76.7%) and postpartum haemorrhage (PPH) (41/109; 37.6%). FBD experience multiple bleeding symptoms and obstetrical-gynaecological morbidity. The female UDC is the first prospective, longitudinal surveillance in the US focusing on FBD and has the potential to further identify complications and reduce adverse outcomes in this population.
Subjects:

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Adolescent Adult Aged Aged, 80 And Over Blood Coagulation Disorders, Inherited Child Child, Preschool Contraceptive Agents, Female Female Humans Longitudinal Studies Menorrhagia Middle Aged Population Surveillance Postpartum Hemorrhage Pregnancy Pregnancy Complications, Hematologic Prospective Studies United States Young Adult
Keywords:

[+]

Gynaecology Heavy Menstrual Bleeding Inherited Bleeding Disorders Obstetrics Von Willebrand Disease Women
Source:

Haemophilia. 2011; 17(0 1):6-13
Pubmed ID:

21692922
Pubmed Central ID:

PMC4467796
Document Type:

Journal Article
Funding:

CC999999/Intramural CDC HHSUnited States/
Volume:

17
Collection(s):

CDC Public Access
Main Document Checksum:

[+]

urn:sha256:772413e719f59480c5cd2c2e0bbdece9acae4488dcd6464aee49ff79e127335f
Download URL:

https://stacks.cdc.gov/view/cdc/33778/cdc_33778_DS1.pdf
File Type:

nihms698076.nxml

xml

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