Health and treatment outcomes of patients with hemophilia in the Netherlands, 1972-2019

S. Hassan, E.C. van Balen, C. Smit, E.P. Mauser-Bunschoten, L.F.D. van Vulpen, J. Eikenboom, E.A.M. Beckers, L. Hooimeijer, P.F. Ypma, L. Nieuwenhuizen, M. Coppens, S.E.M. Schols, F.W.G. Leebeek, M.H. Driessens, F.R. Rosendaal, J.G. van der Bom, S.C. Gouw*

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review


Introduction We conducted six cross-sectional nationwide questionnaire studies among all patients with hemophilia in the Netherlands from 1972 until 2019 to assess how health outcomes have changed, with a special focus on patients >50 years of age. Methods Data were collected on patient characteristics, treatment, (joint) bleeding, joint impairment, hospitalizations, human immunodeficiency virus and hepatitis C infections, and general health status (RAND-36). Results In 2019, 1009 patients participated, of whom 48% had mild, 15% moderate, and 37% severe hemophilia. From 1972 to 2019, the use of prophylaxis among patients with severe hemophilia increased from 30% to 89%. Their median annual bleeding rate decreased from 25 to 2 bleeds. Patients with severe hemophilia aged <16 years reported joint impairment less often over time, but in those aged >40 years joint status did not improve. In 2019, 5% of all 1009 patients were positive for the human immunodeficiency virus. The proportion of patients with an active hepatitis C infection drastically decreased from 45% in 2001 to 2% in 2019 due to new anti-hepatitis C treatment options. Twenty-five percent had significant liver fibrosis even after successful therapy. Compared to the general male population, patients aged >50 years reported much lower scores on the RAND-36, especially on physical functioning. Discussion/Conclusion Our study shows that increased use of prophylactic treatment and effective hepatitis C treatment have improved joint health and nearly eradicated hepatitis C infection in patients with hemophilia in the Netherlands. However, patients still suffer from hemophilia-related complications, especially patients aged >50 years.
Original languageEnglish
Pages (from-to)2394-2406
Number of pages13
JournalJournal of Thrombosis and Haemostasis
Issue number10
Early online date7 Jul 2021
Publication statusPublished - Oct 2021


  • bleeding
  • clinical outcomes
  • hemophilia
  • joint damage
  • quality of life
  • SF-36
  • CARE

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