For patients with hemophilia, von Willebrand disease or another inherited bleeding disorder optimal comprehensive care includes at least one visit per year to a hemophilia treatment center.
Patients who visit the UC Davis Hemostasis and Thrombosis Cneter (HTC) will be evaluated by a multidisciplinary team of hemophilia experts including a hematologist, nurse coordinator, social worker, and when appropriate, a physical therapist. The HTC core team is highly trained to recognize areas of serious risk for patients with a bleeding disorder that could cause either life-threatening or permanent damage, and the team works with the patient's primary care physician with findings and recommendations regarding treatment and possible referrals.
HTC visits are comprehensive. They include reviews of the individual's history and current condition in light of new information and recent research results. The pediatric or adult hematologist examines the patient, reviews any medical problems, discusses bleeding episodes and their location, and evaluates joints with the physical therapist. They order necessary laboratory tests and make referrals to specialists when needed. The patient and family are given treatment information and recommendations, in order for them to be partners in managing the bleeding disorder. The hemophila nurse coordinator evaluates the patient/family's understanding of the specific bleeding disorder, its management plan, possible complications and reviews home infusion techniques. The need for education and treatment follow-up needs are assessed as well. The hemophilia social worker assesses how the patient/family has adapted to the bleeding disorder diagnosis, including reviews of life style, social support system, insurance coverage, legal issues, and educational barriers. A prime task is to link individuals and families to bleeding disorder organizations and support activities such as summer camp, youth activities and parent groups. If appropriate, the physical therapist, measures the range of motion, and both preventative and restorative treatment plans will be addressed. Patients are also encouraged to contact the HTC for assistance when questions about injuries or treatment arise after their visit.
Patients who are followed at federally funded hemophilia treatment centers, like the UC Davis HTC, have significanly better outcomes than those seen elsewhere, according to a comprehensive study conducted by the Centers for Disease Control and Prevention.
Patient benefits of a comprehensive federally-funded hemophilia treatment center:
- Decreased Mortality
- Patient and family Independence
- Fewer physical complications
- Lower treatment costs
- Fewer infectious complications
- Fewer hospital admissions
- Shorter hospital stays
- Less lost time at school/work
- Higher employment rates
Home self-infusion is the ability to receive antihemophilic factor at home through intravenous infusion by the patient, a family member, or a home health nurse thereby avoiding the emergency room whenever possible. Education and training in self-infusion are available to all patients and their families. The HTC team has videotapes, literature and access to home health nurses who specialize in teaching self-infusion to patients and families, who will learn to recognize the early signs of any bleeding episode, including potentially life-threatening bleeding situations.
Home self-infusion benefits the patient, family and medical system by:
- Preventing mortality and long-term joint complications by providing rapid treatment
- Decreasing the need for repeated expensive visits to the emergency room, where patients with bleeding disorders often experience for waits and staff inexperienced in the complications of bleeding
Allowing the patient and family the freedom to control the treatment of the bleeding disorder enables them to experience a more normal life, with fewer interruptions in school, work and recreation.
Home self-infusion training includes universal precautions (sterile techniques to avoid transmittal of possible blood borne infections) and should be reviewed annually.