Patient discussions

Patients with mild hemophilia A or B: factor concentrates are infused as needed for bleeding control.

Some patients with moderate hemophilia A or B and most patients with severe hemophilia A or B: factor concentrates are infused prophylactically to maintain a measurable factor VIII or factor IX level at all times.

The patient and family need advice and education regarding home factor replacement therapy.[38][69] Further specific information about what to do when there is an acute bleeding episode is required. Advice should be:

  • Infuse with factor concentrates as early as possible if bleeding occurs

  • In case of trauma, infuse with factor concentrates; the hemophilia treatment center must be contacted and the patient must be evaluated in the hospital

  • Antifibrinolytic agents (such as tranexamic acid or aminocaproic acid) may be used alone or in combination with factor concentrates for dental procedures or oral or nasal bleeding. Antifibrinolytic agents are contraindicated for the treatment of hematuria, and in the setting of thoracic surgery.[38] Antifibrinolytics should not be used for the treatment of any bleed whenever there is hematuria. Antifibrinolytics should also be avoided in patients with bleeding into the thoracic cavity.

Advice on preventive measures include to:

  • Avoid the use of aspirin and nonsteroidal anti-inflammatory drugs

  • Always wear a helmet when riding a bicycle

  • Always wear a medical alert bracelet or necklace

  • Avoid contact sports, although participation in many sports is feasible for most patients with hemophilia on prophylaxis

  • Avoid trauma as much as possible

  • Always follow your prophylactic therapy schedule.

Give advice to patients and caregivers on immunizations, including information on:[50][151][152]​​​

  • Following recommended vaccination schedules for age

  • Having immunizations for hepatitis A and B

  • The risk of hematoma at injection sites and measures that can be taken to reduce the risk, including subcutaneous injection for some vaccines.

Patients should be encouraged to practice regular exercise appropriate to joint status, especially swimming, to improve their quality of life.[153][154]​ A physical therapist should provide ongoing education and support, including advice on physical activity and healthy living.[78]

Patients and their caregivers may find online resources published by various professional bodies useful. National Hemophilia Foundation Opens in new window World Federation of Hemophilia Opens in new window Hemophilia Federation of America Opens in new window

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