Assessing health-related quality-of-life in individuals with haemophilia

The objectives of this study were to analyse current levels of health-relat ed quality-of-life (HR-QoL) in individuals with severe haemophilia and to a ssess the scope for these levels to improve. To do this, 249 individuals wi th severe, moderate and mild haemophilia were asked to complete Medical Out comes Study (MOS) Short-Form 36 (SF-36) and EuroQol (EQ-5D) questionnaires. Access was also gained to two appropriate normative data sets. The results from these questionnaires showed that HIV status, history of orthopaedic s urgery and bleeding frequency in the previous calendar year were not strong predictors of HR-QoL for individuals with severe haemophilia. However, for the majority of scales, age was found to be a strong predictor of HR-QoL f or this patient group. The results from the analysis also showed that compa red to individuals with moderate/mild haemophilia and the UK male normative population, individuals with severe haemophilia generally recorded poorer levels of HR-QoL. These results suggest, therefore, that individuals with s evere haemophilia have reduced levels of HR-QoL compared to individuals wit h moderate/mild haemophilia and the general population, irrespective of dif ferences in age. The results also suggest that the scope for primary prophy laxis to increase HR-QoL in individuals with severe haemophilia is signific ant.