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

Shermarke Hassan, Erna C. van Balen, Cees Smit, Evelien P. Mauser-Bunschoten, Lize F.D. van Vulpen, Jeroen Eikenboom, Erik A.M. Beckers, Louise Hooimeijer, Paula F. Ypma, Laurens Nieuwenhuizen, Michiel Coppens, Saskia E.M. Schols, Frank W.G. Leebeek, Mariëtte H. Driessens, Frits R. Rosendaal, Johanna G. van der Bom, Samantha C. Gouw*

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

4 Citations (Scopus)
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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 date12 Jun 2021
Publication statusPublished - Oct 2021


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