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Blood, Vol. 96 No. 2 (July 15), 2000:
pp. 437-442
Mortality among males with hemophilia: relations with source of
medical care
J. Michael Soucie,
Rachelle Nuss,
Bruce Evatt,
Abdou Abdelhak,
Linda Cowan,
Holly Hill,
Marcia Kolakoski,
Nancy Wilber, and
the Hemophilia Surveillance System Project Investigators
From the Hematologic Diseases Branch, Division of AIDS, STD, and TB
Laboratory Research, National Center for Infectious Diseases, Centers
for Disease Control and Prevention, Atlanta, GA; Mountain States
Regional Hemophilia Center, Aurora, CO; Tulane University Medical
School, New Orleans, LA; Oklahoma University Health Sciences Center,
Oklahoma City, OK; Emory University School of Public Health, Atlanta,
GA; New York State Department of Health, Albany, NY; and the
Massachusetts Department of Public Health, Boston, MA.
Although persons with hemophilia are known to be at increased risk
of death, no studies have examined the source of medical care and other
personal characteristics for associations with mortality. To determine
death rates and to identify causes of death and predictors of
mortality, we studied a cohort comprised of all hemophilic males
identified by a six-state surveillance system. Data were obtained by
medical record review of contacts with physicians, hemophilia treatment
centers (HTCs), and other sources of care during 1993-1995 and from
death certificates. Factors examined included age, race, state of
residence, health insurance type, medical care source, hemophilia
type/severity, presence of inhibitor, liver disease, HIV infection, and
AIDS. A total of 2950 subjects were followed for an average of 2.6 years. Their median age was 22 years; 73% were white, 79% had
hemophilia A, 42% had severe disease, and 67% had visited an HTC.
During 7575 person years (PYs) of observation, 236 persons died an
age-adjusted mortality rate of 40.4 deaths/1000 PYs; 65% of deaths
were HIV related. In addition to age, factors independently associated with increased risk of death (relative risk, P value) were the following: AIDS (33.5, <.001); HIV infection (4.7, <.001); liver disease (2.4, <.001); and Medicare/Medicaid insurance (1.4, .01). Those persons who had received care in an HTC had a significantly decreased risk of death (0.6, .002). Although HIV infection and the
presence of severe liver disease remain strong predictors of mortality,
survival is significantly greater among hemophilics who receive medical
care in HTCs.
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