Comprehensive or integrated care treats the whole person and the family, through continuous supervision of all the medical and psychosocial aspects of bleeding disorders. Comprehensive care is total care because every facet of the person is addressed, including their physical, emotional, psychological, educational, financial and vocational factors. The development of comprehensive care over the past 30 years has greatly improved the quality of life for people with bleeding disorders, helping them to be more independent and productive. The treatment center care network has also improved patient’s overall health.

In 2016, NBDF published the NHF-McMaster University Guideline on Care Models for Hemophilia Management. This evidence-based clinical practice guideline was developed to determine best practices for hemophilia care to optimize outcomes.The guideline suggests that the integrated model of care, in its current structure, is optimal care for people with hemophilia.

Hemophilia Treatment Centers (HTCs)

In 1973, NBDF launched a two-year campaign to establish the creation of a nationwide network of hemophilia diagnostic and treatment centers. The goal was to provide a range of comprehensive services for patients and families within one treatment facility. Today, there are about 141 federally funded treatment centers and programs across the country. Although they are called hemophilia treatment centers, HTCs provide comprehensive care for people with VWD and other bleeding disorders.

Having a chronic disease such as hemophilia or VWD often means spending time and effort negotiating the healthcare system. The hematologists, nurses, social workers, and physical therapists not only help people with bleeding disorders with their medical care issues, but also lend tremendous emotional support. Many people with bleeding disorders use the resources of their HTC for many years because the staff understands their unique needs.

People who go to HTCs will not only find state-of-the art medical care, but also benefit from an experienced, caring staff that takes time to develop comprehensive treatment care plans for patients and families.

The treatment center not only provides specialty care but can also act as a resource to your regular family physician or dentist.

Members of the care team at an HTC can include:

• Hematologists: specialists in blood disorders.
• Pediatricians: specialists in caring for infants, young children and teenagers.
• Nurses: medical specialists in bleeding disorders care. The nurse is probably the person you will see most frequently.
• Social Workers: specialists who assist you with the issues of daily living, such as adjusting to living with a bleeding disorder, and locating resources (e.g., insurance, transportation, housing).
• Physical Therapists: specialists in activity, exercise and rehabilitation.
• Orthopedists: specialists in disorders of the bones and joints.
• Dentists: specialists in disorders of the teeth and gums. The dentists at HTCs are experts in treating children with oral bleeding problems.
• Patients and Families: You are an important member of the treatment team. The staff needs your input to develop a plan of care that will ensure you remain healthy, active, and able to live successfully with added challenge of a bleeding disorder.