title: Quality of life in adult patients with haemophilia--a single centre experience from Sweden.
abstract: Increased or maintained health and quality of life (HRQoL) are essential goals in health care among patients with a chronic disease. To gain an understanding 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.
authors.affiliation: Lund University, Malmö Centre for Thrombosis and Haemostasis, Malmö, Sweden. karin.lindvall@med.lu.se
authors.forename: K
authors.initials: K
authors.lastname: Lindvall
authors.forename: S
authors.initials: S
authors.lastname: Von Mackensen
authors.forename: E
authors.initials: E
authors.lastname: Berntorp
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D006304:Health Status; D006467:Hemophilia A / Q000523:psychology*; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D011788:Quality of Life; D011795:Surveys and Questionnaires; D013548:Sweden; D055815:Young Adult