Quantifying adherence to treatment and its relationship to quality of life in a well-characterized haemophilia population.

It is known that chronically ill patients adhere to medical treatment plans only 50% of the time. Adherence to treatment with factor infusion therapy in haemophilia patients is essential to stop bleeding. It also prevents both acute and chronic life and limb threatening complications. This study, performed in a well-described haemophilia population, was completed in an effort to understand the critical issue of adherence in patients with haemophilia. A major component of the methodology of this study was the development of a unique scoring system to quantify adherence. Adherence scores in patients on On-Demand treatment strategies were then compared to those on High Intensity treatment strategies. Quality of life (QoL) studies were also performed on the study population to assess the association of treatment regimen and adherence scores to QoL measures. Results of this study demonstrated that adherence to On-Demand therapy was significantly greater than adherence to High Intensity treatment regimens and in children, High Intensity treatment regimens, which included prophylaxis, correlated with better QoL scores in body pain. It is envisioned that the development of an objective scoring system for adherence will prove useful in future studies of adherence as well as in the development of intervention strategies that can overcome barriers to adherence in haemophilia patients.