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Adherence to prophylaxis and bleeding outcome in haemophilia: a multicentre study
LieSbeth H Schrijvers1, Marlene Beijlevelt-van der Zande2, Marjolein Peters2
1Van Creveldkliniek, University Medical Centre, Utrecht, the Netherlands.
British Journal of Haematology
|April 22, 2016
Summary
Adherence to prophylactic therapy is crucial for preventing bleeding in severe hemophilia (a bleeding disorder). While non-adherence is rare, many patients struggle with the correct timing of infusions, impacting treatment effectiveness.
Area of Science:
- Hematology
- Patient Adherence
- Bleeding Disorders
Background:
- Effective prevention of bleeding and joint damage in severe hemophilia relies on consistent prophylactic replacement therapy.
- Assessing patient adherence is vital for optimizing treatment outcomes in hemophilia management.
Purpose of the Study:
- To evaluate adherence to prophylactic treatment in severe hemophilia patients.
- To investigate the relationship between adherence, patient demographics, bleeding events, and clotting factor consumption (CFC).
Main Methods:
- A study involving 241 severe hemophilia patients across three Dutch centers.
- Semi-structured interviews were used to assess adherence over the preceding two weeks.
- Patients were categorized as adherent, sub-optimally adherent, or non-adherent based on infusion timing, dose, and missed doses.
Main Results:
- Overall adherence was higher among parents (66%) compared to patients (43%).
- Sub-optimal adherence, primarily due to timing variations, affected 29% of parents and 37% of patients.
- Non-adherence was infrequent (5% in parents, 20% in patients) and associated with lower clotting factor consumption (CFC), but not joint bleeding.
Conclusions:
- Non-adherence to hemophilia prophylaxis is uncommon, but a significant proportion of patients experience difficulties with the precise timing of infusions.
- Addressing timing challenges in prophylaxis administration is essential for improving adherence and long-term outcomes in hemophilia care.
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