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Prepublished online as a Blood First Edition Paper on June 19, 2003; DOI 10.1182/blood-2003-03-0941.
Submitted March 26, 2003
Accepted May 12, 2003
Cost of care and quality of life in hemophilia complicated by inhibitors: the COCIS Study Group
Alessandro Gringeri, Lorenzo G Mantovani*, Luciana Scalone, and Pier Mannuccio Mannucci
University of Milan, Angelo Bianchi Bonomi Hemophilia and Thrombosis Center, Milan, Italy; Department of Internal Medicine, IRCCS Maggiore Hospital, Milan, Italy
University of Milan, Center of Pharmacoeconomics, Milan, Italy
* Corresponding author; email: lorenzo.mantovani{at}unimi.it.
Inhibitors in patients with hemophilia are a rare complication of a rare disease causing pain, disability and impairment in quality of life. Recent advances in treatment have improved this situation, but with the absorption of a larger amount of financial resources. This study involved 52 Italian hemophiliacs with high responding inhibitors, longitudinally observed for 18 months with the aim to evaluate concomitantly cost of care and quality of life. Overall 0.6 bleeding episodes/patient/month were recorded, this frequency of events being lower than that reported in other cohorts of hemophiliacs without inhibitors. The average monthly cost of care was 18,000 Euros per patient, mainly due to 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 severe hemophiliacs without inhibitors. In particular, physical quality of life was similar to that in diabetic and dialyzed patients, while 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 a management that provides a satisfactory quality of life.
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