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Health and treatment outcomes of patients with hemophilia in the Netherlands, 1972–2019
Author(s) -
Hassan Shermarke,
Balen Erna C.,
Smit Cees,
MauserBunschoten Evelien P.,
Vulpen Lize F. D.,
Eikenboom Jeroen,
Beckers Erik A. M.,
Hooimeijer Louise,
Ypma Paula F.,
Nieuwenhuizen Laurens,
Coppens Michiel,
Schols Saskia E. M.,
Leebeek Frank W. G.,
Driessens Mariëtte H.,
Rosendaal Frits R.,
Bom Johanna G.,
Gouw Samantha C.
Publication year - 2021
Publication title -
journal of thrombosis and haemostasis
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.947
H-Index - 178
eISSN - 1538-7836
pISSN - 1538-7933
DOI - 10.1111/jth.15424
Subject(s) - medicine , population , pediatrics , hepatitis c , human immunodeficiency virus (hiv) , hepatitis , immunology , environmental health
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.