About Comprehensive Hemophilia Care
Overview
Studies by the Centers for Disease Control (CDC) show that people with hemophilia who receive medical care through a designated hemophilia treatment center (HTC) have a significantly reduced risk of bleeding complications, better school and work attendance and improved emotional health and well-being. Comprehensive care is designed to provide an integrated and multidisciplinary approach to patients of all ages and their families. By emphasizing early diagnosis and intervention to prevent disease complications, HTCs create a positive impact on the health and survival of people with bleeding disorders.
Your Care Team
- Physician/Hematologist
The physician will do a complete physical examination on you, with an emphasis on hemophilia-related problems. They will evaluate your current treatment and make recommendations for the management of your bleeding disorder. You may also see a medical resident or fellow (a person with a medical degree who is in a supervised learning setting). Both your hemophilia doctor and the resident/fellow will visit with you to talk about the plan they have developed for your care.
- Clinical nurse
The nurse will talk to you about home treatment records, your bleeding history, and any other health problems you might be having. If you are ready for home infusions, the nurse will make an appointment for training. The nurse will also provide you with any educational materials that you might need.
- Research nurse
The research nurse will speak with you about any research studies you or your child may be eligible for and will fill out all necessary consents and paperwork to enroll you or your child.
- Physical therapist
The physical therapist will do an evaluation of your musculoskeletal system. They will measure your range of motion, muscle strength and gait. The physical therapist will review any problems and recommend specific exercises and/or rehabilitation programs.
- Social worker
The social worker will see you to discuss issues that might be affecting your ability to care for yourself or your child. The social worker will also talk to you about insurance, school issues, employment and other psychosocial concerns.
- Genetics counselor
The genetics counselor will speak with you and answer any questions you may have about how bleeding disorders are inherited. The counselor will draw a pedigree (family diagram) using your family history of bleeding disorders and other health problems.
- Pharmacist
The pharmacist will speak with you about all current medications you or your child are taking. They will also discuss the medications currently available to treat your bleeding disorder.