title: Epidemiological survey of the orthopaedic status of severe haemophilia A and B patients in France. The French Study Group. secretariat.haemophiles@cch.ap-hop-paris.fr.
abstract: One hundred and 16 patients contributed to an analysis of the impact of the consequences of severe haemophilia A or B (factor levels < 2%) on orthopaedic status, resources consumed in relation to this status and resultant cost, and quality of life as perceived by the patient, using the MOS 36-Item-Short-Form Health Survey (SF-36). This French cross-sectional study involved outpatients regularly attending a haemophilia treatment centre. Data were collected retrospectively over a period of 1 year by the physician of the haemophilia treatment centre. Patients had a mean age of 23, and consisted of 50% students, 25% salaried workers, 17.2% with no professional activity and 7.8% physically impaired; 82.8% of them had type A haemophilia. Mean pain score was 2.5 per patient for the six main joints; 7.7 for the clinical score and 18.8 for the radiological score, with a mean number of bleeds of 16.3 per year per patient. During the year prior to inclusion, and because of their orthopaedic status, 22.4% of patients were hospitalized, 76.7% attended for an outpatient visit and 76.7% required at least one special investigation; 97.4% received replacement therapy, 41.4% required treatment for joint pain and 42.2% orthopaedic equipment. The less affected dimensions were the physical function (76.8 +/- 22. 2) and the social relations (76.1 +/- 23.1). Least good quality of life scores concerned the pain (60.2 +/- 25.2), perception of general health (59.3 +/- 23.1) and vitality (57.8 +/- 19.5) dimensions. The age was a discriminant criterion since quality of life was better in patients of the 18-23 age group for five dimensions. Mean annual treatment costs of a patient with severe haemophilia were determined as 425 762 French francs ($73 029). Loss of production was estimated at a mean of 4609 French francs ($791) per active patient over the course of the year. Results showed indirect evidence of the usefulness of early home treatment.
authors.affiliation: Cochin Hospital Group, Paris, France.
authors.forename: P
authors.initials: P
authors.lastname: Molho
authors.forename: N
authors.initials: N
authors.lastname: Rolland
authors.forename: T
authors.initials: T
authors.lastname: Lebrun
authors.forename: G
authors.initials: G
authors.lastname: Dirat
authors.forename: J P
authors.initials: JP
authors.lastname: Courpied
authors.forename: T
authors.initials: T
authors.lastname: Croughs
authors.forename: I
authors.initials: I
authors.lastname: Duprat
authors.forename: Y
authors.initials: Y
authors.lastname: Sultan
mesh_terms: D000041:Absenteeism; D000203:Activities of Daily Living; D000293:Adolescent; D000328:Adult; D000367:Age Factors; D000842:Ankle / Q000000981:diagnostic imaging / Q000503:physiopathology; D018771:Arthralgia; D001175:Arthrography; D015331:Cohort Studies; D003365:Costs and Cost Analysis; D003430:Cross-Sectional Studies; D003625:Data Collection; D004526:Efficiency; D004551:Elbow Joint / Q000000981:diagnostic imaging / Q000503:physiopathology; D005602:France / Q000453:epidemiology; D006395:Hemarthrosis; D006467:Hemophilia A / Q000150:complications* / Q000453:epidemiology / Q000628:therapy; D002836:Hemophilia B / Q000150:complications* / Q000453:epidemiology / Q000628:therapy; D006470:Hemorrhage; D006801:Humans; D007592:Joint Diseases / Q000191:economics / Q000209:etiology* / Q000628:therapy; D007717:Knee / Q000000981:diagnostic imaging / Q000503:physiopathology; D008297:Male; D019637:Orthopedic Procedures / Q000191:economics / Q000379:methods; D010147:Pain Measurement; D010809:Physical Fitness; D011788:Quality of Life; D012959:Socioeconomic Factors; D013030:Spain / Q000453:epidemiology