Thirty years of hemophilia treatment in the Netherlands, 1972-2001.
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.
Leiden University Medical Center, Clinical Epidemiology and the Thrombosis and Hemostasis Research Center, Leiden, The Netherlands.
Iris
I
Plug
Johanna G
JG
van der Bom
Marjolein
M
Peters
Evelien P
EP
Mauser-Bunschoten
Arja
A
de Goede-Bolder
Lily
L
Heijnen
Cees
C
Smit
Jeannette E F
JE
Zwart-van Rijkom
José
J
Willemse
Frits R
FR
Rosendaal
D005164:Factor IX / Q000276:immunology / Q000627:therapeutic use; D005169:Factor VIII / Q000276:immunology / Q000627:therapeutic use; D015658:HIV Infections / Q000635:transmission; D006467:Hemophilia A / Q000150:complications / Q000276:immunology / Q000628:therapy*; D006470:Hemorrhage / Q000209:etiology / Q000517:prevention & control; D006526:Hepatitis C / Q000635:transmission; D006760:Hospitalization; D006801:Humans; D009426:Netherlands / Q000453:epidemiology; D011795:Surveys and Questionnaires
D005169:Factor VIII; D005164:Factor IX