Patient discussions

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

Some patients with moderate haemophilia A or B and most patients with severe haemophilia 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][68] 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 haemophilia treatment centre 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 haematuria, and in the setting of thoracic surgery.[38] Antifibrinolytics should not be used for the treatment of any bleed whenever there is haematuria. 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 non-steroidal 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 haemophilia on prophylaxis

  • Avoid trauma as much as possible

  • Always follow your prophylactic therapy schedule.

Give advice to patients and carers on immunisations, including information on:[50][153]​​​[154]​​

  • Following recommended vaccination schedules for age

  • Having immunisations for hepatitis A and B

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

Patients should be encouraged to take regular exercise appropriate to joint status, especially swimming, to improve their quality of life.[155][156]​ A physiotherapist should provide ongoing education and support, including advice on physical activity and healthy living.[77]

Patients and their carers may find online resources published by various professional bodies useful. The Haemophilia Society Opens in new window 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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