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Blood, 15 February 2008, Vol. 111, No. 4, pp. 1811-1815. Prepublished online as a Blood First Edition Paper on November 6, 2007; DOI 10.1182/blood-2007-07-102202. This Article Full Text (PDF) All Versions of this Article: blood-2007-07-102202v1 111/4/1811    most recent Alert me when this article is cited Alert me if a correction is posted Services Email this article to a friend Similar articles in this journal Similar articles in PubMed Alert me to new issues of the journal Download to citation manager Rights and Permissions Citing Articles Citing Articles via HighWire Citing Articles via CrossRef Citing Articles via Google Scholar Google Scholar Articles by Plug, I. Articles by van der Bom, J. G. Search for Related Content PubMed PubMed Citation Articles by Plug, I. Articles by van der Bom, J. G. Related Collections Related Article in Blood Online Social Bookmarking                   What's this?  Previous Article  |  Next Article  Submitted July 27, 2007 Accepted October 15, 2007 Social participation of patients with hemophilia in the Netherlands Iris Plug, Marjolein Peters, Eveline P Mauser-Bunschoten, Arja de Goede-Bolder, Lily Heijnen, Cees Smit, Jose Willemse, Frits R Rosendaal*, and Johanna G. van der Bom Department of Clinical Epidemiology, Leiden University Medical Center, Leiden, Netherlands Emma Children's Hospital, Academic Medical Center, Amsterdam, Netherlands Hematology and Van Creveldkliniek, University Medical Center Utrecht, Utrecht, Netherlands Sophia Children's Hospital, Erasmus Medical Center, Rotterdam, Netherlands Rehabilitation Center "de Trappenberg", Huizen, Netherlands Netherlands Hemophilia Society, Badhoevedorp, Netherlands Einthoven Laboratory for Experimental Vascular Medicine, Leiden University Medical Center, Leiden, Netherlands * Corresponding author; email: f.r.rosendaal{at}lumc.nl. The introduction of replacement therapy in the 1960s has improved medical and social circumstances gradually. The availability of prophylactic treatment has further increased the possibilities of a "normal" life for patients with hemophilia. We examined whether social participation and health related quality of life of today's hemophilia patients differs from the general male population. 721 participants to the Hemophilia in the Netherlands-5 study (HiN-5 study) were aged between 16 and 64 years. Patients with severe hemophilia participated less in full time work compared to the general population. Occupational disability was reported by 35% of patients with severe hemophilia between 31 and 64 years, compared to 9% in the general population. HRQol of patients with severe hemophilia between 31 and 64 years was lower than of the general population. The differences with the general population in HRQol health related quality of life were least pronounced for patients between 16 and 30 years. Despite major improvements in treatment during the last decades patients with hemophilia are still less involved in full time paid work and suffer more from occupational disability than men from the general population. After the introduction of prophylactic treatment the number of patients who are occupationally disabled is reduced. CiteULike    Connotea    Del.icio.us    Digg    Reddit    Technorati    What's this? Related Article in Blood Online: Hemophilia lives: the impact of prophylaxis Louis M. Aledort Blood 2008 111: 1752-1753. [Full Text] [PDF] This article has been cited by other articles: B. Waters, M. Qadura, E. Burnett, R. Chegeni, A. Labelle, P. Thompson, C. Hough, and D. Lillicrap Anti-CD3 prevents factor VIII inhibitor development in hemophilia A mice by a regulatory CD4+CD25+-dependent mechanism and by shifting cytokine production to favor a Th1 response Blood, January 1, 2009; 113(1): 193 - 203. [Abstract] [Full Text] [PDF]

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