University of Surrey

Test tubes in the lab Research in the ATI Dance Research

Clinical outcome of moderate haemophilia compared with severe and mild haemophilia.

den Uijl, IE, Fischer, K, Van Der Bom, JG, Grobbee, DE, Rosendaal, FR and Plug, I (2009) Clinical outcome of moderate haemophilia compared with severe and mild haemophilia. Haemophilia, 15 (1). pp. 83-90.

Full text not available from this repository.

Abstract

UNLABELLED: Information on outcome and treatment of patients with moderate haemophilia is scarce. In this study, we compared self-reported burden of disease in moderate haemophilia to severe and mild haemophilia. A nationwide questionnaire on bleeding pattern, treatment, impairment and quality of life was sent to 1567 Dutch patients with haemophilia. Out of 1066 respondents (response rate: 68%), 16% had moderate, 44% severe and 39% mild haemophilia. Median age was 36 years. Although overall outcome in moderate haemophilia was in between severe and mild haemophilia, moderate haemophilia patients did report a substantial burden of disease. The majority of patients with moderate haemophilia (73%) reported bleeds in the previous year; and a considerable proportion of moderate patients reported joint impairment (43%), chronic pain (15%), needed orthopaedic aids (24%) or were unemployed because of disability (27%). Within the group of moderate haemophilia patients, a large variation in bleeding pattern and outcome was observed. A quarter of patients with moderate haemophilia reported a more severe phenotype and intermittent use of prophylaxis. These patients reported frequent bleeding, with a median of eight bleeds per year, including two joint bleeds, and 68% reported joint impairment. IN CONCLUSION: Although outcome in moderate haemophilia is generally in between severe and mild haemophilia, moderate haemophilia patients reported a substantial burden of disease, and for more than 25% of patients with moderate haemophilia long term prophylaxis was implemented because of frequent bleeds.

Item Type: Article
Authors :
NameEmailORCID
den Uijl, IEi.denuijl@surrey.ac.ukUNSPECIFIED
Fischer, KUNSPECIFIEDUNSPECIFIED
Van Der Bom, JGUNSPECIFIEDUNSPECIFIED
Grobbee, DEUNSPECIFIEDUNSPECIFIED
Rosendaal, FRUNSPECIFIEDUNSPECIFIED
Plug, IUNSPECIFIEDUNSPECIFIED
Date : January 2009
Identification Number : 10.1111/j.1365-2516.2008.01837.x
Uncontrolled Keywords : Adolescent, Adult, Aged, Aged, 80 and over, Child, Child, Preschool, Cost of Illness, Disability Evaluation, Drug Utilization, Employment, Hemarthrosis, Hemophilia A, Hemorrhage, Humans, Infant, Male, Middle Aged, Netherlands, Prognosis, Quality of Life, Severity of Illness Index, Socioeconomic Factors, Young Adult
Related URLs :
Depositing User : Symplectic Elements
Date Deposited : 17 May 2017 10:29
Last Modified : 17 May 2017 14:49
URI: http://epubs.surrey.ac.uk/id/eprint/827992

Actions (login required)

View Item View Item

Downloads

Downloads per month over past year


Information about this web site

© The University of Surrey, Guildford, Surrey, GU2 7XH, United Kingdom.
+44 (0)1483 300800