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Prepublished online as a Blood First Edition Paper on June 19, 2003; DOI 10.1182/blood-2003-03-0941. This Article Full Text Full Text (PDF) All Versions of this Article: 2003-03-0941v1 102/7/2358    most recent Alert me when this article is cited Alert me if a correction is posted Citation Map 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 Gringeri, A. Articles by Mannucci, P. M. Search for Related Content PubMed PubMed Citation Articles by Gringeri, A. Articles by Mannucci, P. M. Related Collections Hemostasis, Thrombosis, and Vascular Biology Clinical Trials and Observations Social Bookmarking                   What's this?  Previous Article  |  Table of Contents  |  Next Article  Blood, 1 October 2003, Vol. 102, No. 7, pp. 2358-2363 CLINICAL OBSERVATIONS, INTERVENTIONS, AND THERAPEUTIC TRIALS Cost of care and quality of life for patients with hemophilia complicated by inhibitors: the COCIS Study Group Alessandro Gringeri, Lorenzo G. Mantovani, Luciana Scalone, and Pier Mannuccio Mannucci, the COCIS Study Group From the Angelo Bianchi Bonomi Hemophilia and Thrombosis Center, University of Milan; Department of Internal Medicine, IRCCS Maggiore Hospital, Milan; and the Center of Pharmacoeconomics, Department of Pharmacological Sciences, University of Milan, Italy. Inhibitors in patients with hemophilia are a rare complication of a rare disease causing pain and disability in patients and impairment to the quality of their lives. Recent advances in treatment have brought improvements, but they have done so by absorbing larger amounts of financial resources. This study involved 52 Italian patients with hemophilia with high-responding inhibitors who were longitudinally observed for 18 months to evaluate concomitantly cost of care and quality of life. Overall, 0.6 bleeding episodes per patient per month were recorded. This frequency of events was lower than that reported in other cohorts of patients with hemophilia who were not taking inhibitors. The average monthly cost of care was, in euros, €18 000 (US $18 000) per patient, mainly because of treatment products. Recombinant activated factor VII, mostly used for orthopedic surgery, represented 50% of the expenses. Quality of life, measured through validated questionnaires, was similar to that of patients with severe hemophilia without inhibitors. In particular, physical quality of life was similar to that in patients with diabetes and on dialysis, whereas mental quality of life was comparable to that in the general population. This study shows that hemophilia complicated by inhibitors, a prototype of rare disease, requires high amounts of resources for management that provides a satisfactory quality of life. (Blood. 2003;102:2358-2363) CiteULike    Connotea    Del.icio.us    Digg    Reddit    Technorati    What's this? This article has been cited by other articles: J. Krudysz-Amblo, B. Parhami-Seren, S. Butenas, K. E. Brummel-Ziedins, E. D. Gomperts, G. E. Rivard, and K. G. Mann Quantitation of anti-factor VIII antibodies in human plasma Blood, March 12, 2009; 113(11): 2587 - 2594. [Abstract] [Full Text] [PDF] S. Lacroix-Desmazes, A.-M. Navarrete, S. Andre, J. Bayry, S. V. Kaveri, and S. Dasgupta Dynamics of factor VIII interactions determine its immunologic fate in hemophilia A Blood, July 15, 2008; 112(2): 240 - 249. [Abstract] [Full Text] [PDF] S. Dasgupta, A.-M. Navarrete, J. Bayry, S. Delignat, B. Wootla, S. Andre, O. Christophe, M. Nascimbeni, M. Jacquemin, L. Martinez-Pomares, et al. A role for exposed mannosylations in presentation of human therapeutic self-proteins to CD4+ T lymphocytes PNAS, May 22, 2007; 104(21): 8965 - 8970. [Abstract] [Full Text] [PDF]

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