Care at Comprehensive Treatment Centers Can Save Lives throughout the World

April 17 is the 20th Anniversary of World Hemophilia Day. This year's World Hemophilia Day campaign focuses on the importance of comprehensive care, which is central to treating the physical, emotional, psychological, social, and educational needs of people with hemophilia and other bleeding disorders.

Hemophilia is an inherited bleeding disorder that affects 18,000 people (primarily males) in the United States. In hemophilia, the blood does not clot properly. This can lead to spontaneous internal bleeding and bleeding following injuries or surgery. These bleeding episodes can cause severe joint damage, brain damage, damage to other organ systems involved in the bleeding, and, in rare cases, death. However, if the disorder is managed properly, people with hemophilia can live long, healthy lives.

World Hemophilia Day Focuses on Comprehensive Care

Behind every person with hemophilia is a much needed team of support. Each year the World Federation of Hemophilia (WFH) works with people in the bleeding disorders community around the world to increase awareness of hemophilia and other bleeding disorders.

This year's World Hemophilia Day campaign focuses on the importance of comprehensive care, which is central to treating the physical, emotional, psychological, social, and educational needs of people with hemophilia and other bleeding disorders. This is best done when the key health care professionals come together in specialized care teams to look after the treatment requirements of the patient. [1, 2]

Access to a broad team of health care professionals and comprehensive care helps with:

• Accurate diagnosis
• Prompt and effective treatment
• Fewer hospitalizations
• Healthy joints and muscles
• Support for families

CDC's Division of Blood Disorders, along with other federal agencies, supports a network of 135 comprehensive treatment centers able to meet the unique challenges of people with hemophilia.

It Works

A CDC study of 3,000 people with hemophilia in the U.S. showed that those who used a hemophilia treatment center were 40% less likely to die of a hemophilia-related complication compared to those who did not receive care at a treatment center.[3] Similarly, people who used a treatment center were 40% less likely to be hospitalized for bleeding complications. [4]

The Model

Each hemophilia treatment center provides access to healthcare professionals with a range of specialties:

• Hematologists (doctors who specialize in blood)
• Orthopedists (doctors who specialize in bones, joints, and muscles)
• Physical therapists
• Nurses
• Social workers and other mental health professionals

Comprehensive hemophilia treatment centers emphasize prevention services to help reduce or eliminate complications. These services include using preventive medicine and connecting patients with community groups that provide education and support to families. (For more information about how to help prevent complications, visit www.hemophilia.org. )

Advancing Research

One of the major challenges facing researchers and scientists who work on rare disorders such as hemophilia is lack of access to uniform data. Hemophilia treatment centers can participate in CDC's Universal Data Collection (UDC) program, which collects a consistent set of data to monitor the health of people with hemophilia. The data are used to advance research for this condition and other related disorders.

Moving Forward

CDC also supports treatment and research center networks for other bleeding and clotting disorders. There are now six treatment centers for people with thalassemia, four resource centers for people with Diamond Blackfan anemia, and five pilot sites for thrombosis.[5] In addition, CDC would like to conduct research to identify which factors make the comprehensive treatment center model a success. This information could be used to help treat and control other rare and complex medical conditions.

More Information

• Comprehensive Treatment Centers
• CDC's Hemophilia Information
• Universal Data Collection Project
• CDC's Division of Blood Disorders
• World Federation of Hemophilia
• National Hemophilia Foundation
• American Society of Hematology

 References

1. Baker JR, Crudder SO, Riske B, Bias V, Forsberg A. A model for a regional system of care to promote the health and well-being of people with rare chronic genetic disorders. Am J Public Health 2005; 95:1910-1916.
2. Evatt BL. The natural evolution of haemophilia care: developing and sustaining comprehensive care globally. Haemophilia 2006, 12, Suppl. 3, 13–21
3. 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.
4. Soucie JM, Symons J, 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 hemophilia. Haemophilia 2001; 7:198-206.
5. Dowling NF, Beckman MG, Manco-Johnson M, et al. The U.S. thrombosis and hemostasis centers pilot program. J Thromb Thrombolysis 2007; 23:1-7.