CDC supports a network of specialized health-care
centers to prevent and reduce complications experienced by persons with
certain blood disorders. These centers provide comprehensive
health management and prevention services to persons with
bleeding
disorders, thrombophilia (clotting disorders), and
thalassemia. The
centers use multi-disciplinary teams of health-care specialists,
state-of-the art clinical research programs, and outreach and education
programs.
Currently, the network consists of approximately 140 hemophilia treatment
centers (HTCs), eight hemostasis and thrombosis centers, and six
thalassemia care centers. CDC is working to increase the number of
hemostasis and thrombosis centers as well as thalassemia centers.
Model of care
Blood disorders, such as those listed above, are
complex conditions that can lead to chronic health problems. Optimal care
to prevent the complications of these disorders requires a team of health
professionals from several different disciplines. For example, the
professionals who provide comprehensive care in HTCs include
-
adult and pediatric
hematologists
-
nurse coordinators
-
social workers and other mental health professionals
-
dentists
-
orthopedists
-
gynecologists
-
physical therapists
-
coagulation laboratory personnel
The teams work closely with local health-care
providers to meet the specific needs of the affected persons to improve
their quality of life.
Studies conducted by CDC indicate that integrating
services in this way proves to be effective and efficient. The care
provided in HTCs has been shown to significantly improve prevention of
complications for persons with hemophilia. Mortality rates are 40 percent
lower in persons who use HTCs than in those who do not, despite the fact
that the more severely affected patients are the ones who typically visit
these centers. HTCs place a premium on preventive medicine because of the
difficulty and expense of treating the complications of hemophilia.
For the network of thalassemia centers, a modified
model is being developed. Because of the locations and relatively small
number of thalassemia patients in the United States, six "centers of
excellence" are expected to share their support and services with clinics
that serve patients locally.
For more information
Publications:
Soucie JM, Symons J 4th, Evatt B, Brettler D, Huszti
H, Linden J, and the Hemophilia Surveillance System Project Investigators.
Home-based factor infusion therapy and hospitalization for bleeding
complications among males with haemophilia. Haemophilia 2001;7(2):198-206.
Soucie JM, Nuss R, Evatt B, Abdelhak A, Cowan L, Hill
H, Kolakoski M, Wilber N, and the Hemophilia Surveillance System Project
Investigators. Mortality among males with hemophilia: relations with
source of medical care. Blood 2000;96:437-442.
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Date: November 21, 2005
Content source: National Center on Birth Defects and Developmental
Disabilities
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