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 Blood, 1 December 2004, Vol. 104, No. 12, pp. 3494-3500.
Prepublished online as a Blood First Edition Paper on August 12, 2004; DOI 10.1182/blood-2004-05-2008.

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CLINICAL OBSERVATIONS, INTERVENTIONS, AND THERAPEUTIC TRIALS

Thirty years of hemophilia treatment in the Netherlands, 1972-2001

Iris Plug, Johanna G. van der Bom, Marjolein Peters, Evelien P. Mauser-Bunschoten, Arja de Goede-Bolder, Lily Heijnen, Cees Smit, Jeannette E. F. Zwart-van Rijkom, José Willemse, and Frits R. Rosendaal

From the Leiden University Medical Center, Clinical Epidemiology and the Thrombosis and Hemostasis Research Center, Leiden, the Netherlands; Academic Medical Center, Emma Children's Hospital, Amsterdam, the Netherlands; University Medical Center Utrecht, Van Creveldkliniek, Utrecht, the Netherlands; Rehabilitation Center "De Trappenberg," Huizen, the Netherlands; Erasmus Medical Center, Sophia Children's Hospital, Rotterdam, the Netherlands; Hospital Pharmacy Noordoost-Brabant,'s-Hertogenbosch, the Netherlands; Netherlands Hemophilia Society, Badhoevedorp, the Netherlands.

Since the introduction of replacement therapy in the early 1960s by the infusion of plasma-derived factor VIII and IX preparations, important changes have occurred for hemophilia patients. We studied the medical and social developments over 30 years of hemophilia treatment. Since 1972, 5 cross-sectional national postal surveys among all hemophilia patients in the Netherlands were performed, the latest in 2001. The prestructured questionnaires included items on treatment, the presence of inhibitory antibodies against factor VIII or IX, the annual number of bleeding episodes, use of inpatient hospital care, and hepatitis C and HIV infections. Response rate in 2001 was 70%. Young patients (<16 years) with severe hemophilia showed the largest increase in use of prophylaxis, from 34% in 1972 to 86% in 2001. The occurrence of hemorrhages has gradually decreased. Hospital admissions decreased from 47% of all patients in 1972 to 18% in 2001. Our study shows that the treatment of patients with severe hemophilia in the Netherlands has focused on the use of prophylactic treatment, especially in children. This has resulted in a decrease in bleeding frequency and an improvement of the medical and social circumstances of patients.


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