334503
Causes of Death among Patients with Bleeding Disorders Receiving Care at US Hemophilia Treatment Centers, October 2011-December 2014
People with hemophilia and other congenital bleeding disorders experience recurrent bleeding episodes which predispose to increased mortality. People receiving plasma-derived treatment products prior to effective viral inactivation were disproportionately affected by hepatitis C (HCV) and HIV infection.
In the United States, most patients with these disorders receive care at one of the 132 centers of the United States Hemophilia Treatment Center Network (USHTCN). The USHTCN, with the American Thrombosis and Hemostasis Network and the Centers for Disease Control and Prevention, conducts national surveillance for prevalence and outcomes of bleeding disorders, including mortality.
Purpose
To describe the demographics and causes of death of decedents with bleeding disorders cared for within the USHTCN.
Methods
Reporting began July 2013, retrospective to October 2011. Centers submit individual reports for each death among their patients. Reporting completeness is assessed by comparison to aggregate records compiled by the USHTCN annually.
Results
As of January 26, 2015, 51 sites have reported 206 deaths; these results are preliminary. Eighty-six percent of decedents were male; 86% white, 9% black; 10% Hispanic; 59% HCV/HIV+; 79% hemophilia, 13% von Willebrand disease, 8% other. Causes of death differed by HCV/HIV status (table).
Cause of death |
HCV/HIV+ (n=122) |
HCV/HIV- (n=84) |
Accident |
2% |
11% |
Bleeding |
16% |
12% |
Cancer |
19% |
17% |
Cardiovascular |
7% |
20% |
HIV-related |
7% |
0% |
Kidney Disease |
4% |
0% |
Liver Disease |
23% |
0% |
Suicide |
1% |
4% |
Other |
11% |
18% |
Unknown |
9% |
11% |
Conclusion
Viral hepatitis and HIV continue to impact mortality among bleeding disorders patients. Bleeding remains a significant cause of death.
Learning Areas:
Chronic disease management and preventionEpidemiology
Protection of the public in relation to communicable diseases including prevention or control
Learning Objectives:
List the three most common causes of death among patients with bleeding disorders as reported by Hemophilia Treatment Centers.
Discuss how causes of death differ between those with and without superimposed hepatitis or HIV.
Keyword(s): Hepatitis C, Mortality
Qualified on the content I am responsible for because: I have been the project coordinator for the collection of mortality data from hemophilia treatment centers and the analyst of that data since 2005.
Any relevant financial relationships? No
I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.