Assessment of health-related quality of life in hemophilia patients

Abstract

This descriptive study aimed to identify the clinical and socio-demographic profile and measure the health-related quality of life (HRQL) of hemophilia patients. We interviewed a sample of 30 male patients, with a mean age of 34.36 years (minimum 18 and maximum 66 years). HRQL was assessed through the Medical Outcomes Survey 36-item Short Form (SF-36), which contains eight domains. In the sample, 63.3% presented severe hemophilia A and 66.6% displayed some infectious disease transmitted by blood components. The most frequent sequelae caused by the bleeding episodes were hemarthrosis / arthropathy, present in 56.8% of patients, and hemarthrosis / muscular distrophy in 23.3% of them. The most affected domains were physical aspects, pain and emotional aspect; the functional capacity, general health state and mental health state domains displayed intermediary scores; and the least affected domains were social aspects and vitality. In comparison with patients suffering from different chronic health conditions, the hemophilia group presents the lowest score for physical aspects. Knowledge about the most affected HRQL domains allows nurses to offer better nursing care.