ORIGINAL ARTICLE Quality of life in adult patients with haemophilia – a single centre experience from Sweden

Summary. Increased or maintained health and quality of life (HRQoL) are essential goals in health care among patients with a chronic disease. To gain an understand-ing of HRQoL in patients with haemophilia at the Haemophilia Treatment Centre in Malmö, Sweden, patients seen from 2004–2008 were asked to complete the Short form Health Survey, SF-36, also answering to what extent haemophilia, physically and mentally, interferes with their daily life at their annual check-up. Data were extracted from the UMAS Haemophilia Database. Interference of haemophilia in daily life was estimated using a Visual Analogue Scale. A total of 105/ 144 haemophilia patients were included in the study (73%); 28 mildly, 21 moderately and 56 severely affected. The median age of patients at study entry was 44.0 years (range 18–84 years). The comparison of SF-36 data of Swedish haemophilia patients with the general Swedish male population yielded no significant differences in age groups 15–24, 25–34 and 65– 74 years. Patients in age groups 35–44 years, 45– 54 years and 55–64 years were significantly impaired in some of their HRQoL domains. For severely affected patients who filled in SF-36 over a period of 5 years no statistical differences in HRQoL were found. For patients undergoing orthopaedic surgery HRQoL increased in most SF-36 domains. Patients reported in general on the VAS that they feel ‘somehow ’ interfered in their daily life due to haemophilia. The results indicate a need for continuous monitoring of HRQoL to identify an increased need of care in the ageing haemophilia population