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Monitoring outcomes

More than three decades of research has shown that continuous prophylaxis is preferable to on-demand therapy to reduce the frequency of bleeding and to prevent or delay joint damage.

People with haemophilia who are receiving prophylaxis should have an assessment on a regular basis to ensure that the goals of therapy are being met and to make any necessary adjustments to the treatment plan. These assessments should include an evaluation of:

  • Joint health
  • Bleed frequency
  • Psychosocial integration

A number of assessment tools are available to measure and monitor joint status and function, bleeding patterns, and quality of life. For more information on outcome assessment tools, consult the WFH’s Compendium of assessment tools.

Inhibitor development should also be monitored in those receiving prophylaxis. Inhibitor development is particularly common in people with severe haemophilia within the first 75 treatments with clotting factor concentrates. The greatest risk occurs between the first 10-20 treatments.