Hemophilia is manifested by bleeding disorder. But it is more than a bleeding disorder and is complex disorder in terms of diagnosis and management.
Therefore the management of these patients requires a lot more than the treatment and prevention of acute bleeding.
Objectives of Care of Hemophilia are
- Prevention of bleeding
- Long-term management of joint and muscle damage and other sequelae of bleeding
- Management of complications from treatment including inhibitor development and infections transmitted through blood products.
Comprehensive Care
Core Team
Hemophilia patients should ideally be managed in a comprehensive care centre staffed by the following core team
- Hematologist
- Nurse coordinator
- Physiotherapist
- Social worker
The members of core team should have expertise and experience in treating bleeding disorders.
Support Resources
1. Coagulation laboratory capable of
- Clotting factor assays
- Inhibitor detection
2. Appropriate clotting factor concentrates, either plasma derived or recombinant;
If clotting factor concentrates are not available, a blood bank with expertise in preparing fresh frozen plasma (FFP) and cryoprecipitate.
Specialists
Following specialists should be available as consultants, as needed -
- Orthopedic surgeon
- Physiatrist/rheumatologist
- Occupational therapist
- Dentist
- Geneticist
- Hepatologist
- Infectious disease specialist
- Immunologist.
If the center receives patients with chronic musculoskeletal problems frequently, an orthopedic surgeon should be a core team member.
