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Guidelines for the Management of Bleeding Disorders
Keys to improvement of health and quality of life include:
- Inhibitor development
- Viral infection(s) transmitted through blood products requiring long-term management
These management goals are best met by a team of healthcare professionals providing comprehensive care. Hemophilia patients should ideally be managed in a comprehensive care center staffed by the following core team members:
These staff members should have expertise and experience in treating bleeding disorders. The core team members should have access to the following support resources:
A coagulation laboratory capable of clotting factor assays and inhibitor detection
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 should be available as consultants, as needed, and should include, among others, the following:
Infectious disease specialist
In centers where there are many patients with chronic musculoskeletal problems from frequent bleeding, an orthopedic surgeon should be a core team member. Additional specialists could also be members of the core team, depending on the needs of the patient population served.
To provide or coordinate care and services to patients and family.
Patients should be seen by all team members at least yearly (children every 6 months) and a comprehensive management plan should be communicated to the patient and all treatment personnel.
-Smaller centers and personal physicians can provide day-to-day care in coordination and consultation with the comprehensive care center, particularly for patients who live a long distance from the nearest hemophilia treatment center.
Since hemophilia is a lifelong condition, requires expensive treatment, and can be life threatening, it significantly affects many aspects of family life. It is, therefore, important that parents, spouses, and other family members are educated, supportive, and active participants in all aspects of the patient’s care. The comprehensive care team should have the resources to support family members of a person with hemophilia. This may include identifying resources and strategies to help cope with
Risks and problems of everyday living, particularly with management of bleeding
Changes during different stages of the patient’s growth and development
Issues regarding schooling and employment
Risk of another affected child and the options available