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 hemophilia 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/status
  • Bleed frequency
  • Limitations in activities
  • 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 online Compendium of Assessment Tools.

Inhibitor development should also be monitored in all patients. Inhibitor development is particularly common in people with severe hemophilia within the first 75 treatments with clotting factor concentrates. More than 50% of inhibitors develop within the first 15 exposure days.

Updated December 2014


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