ArticleJournal of thrombosis and haemostasis : JTH2021
Health and treatment outcomes of patients with hemophilia in the Netherlands, 1972-2019.
Article in Journal of thrombosis and haemostasis : JTH, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 27 papers.
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Who cites it
27 citing papers in PubMed.
- Psychometric properties and outcomes of the PROMIS Sexual Function and Satisfaction measures in individuals with congenital bleeding disorders.Research and practice in thrombosis and haemostasis · 2026Article
- Assessing the real-world value of hemophilia care: how suitable are patient-centered outcomes for hospital-level comparisons?International journal for quality in health care : journal of the International Society for Quality in Health Care · 2026Article
- Long-term prosthesis survival of total hip and total knee arthroplasty in people with inherited bleeding disorders.Research and practice in thrombosis and haemostasis · 2026Article
- A multicenter prospective observational cohort study to improve diagnostic yield and clinical management of persons with a Bleeding Disorder of Unknown Cause (BDUC-iN study protocol).Research and practice in thrombosis and haemostasis · 2026Observational
- Infrared thermography for detecting compensatory load in people with haemophilia: a cross-sectional study.Thrombosis journal · 2025Article
- Haemophilia B: an illustrative review of current challenges and opportunities.Research and practice in thrombosis and haemostasis · 2025Article
- A qualitative study on the impact of hemophilia on sexual functioning and well-being in Dutch men.Journal of patient-reported outcomes · 2025Article
- Global estimation of the bleeding episodes treatable with desmopressin in von Willebrand disease and hemophilia A.Haematologica · 2025Review
- The Use of Primary Care Physiotherapy for Persons With Bleeding Disorders in the Netherlands-A Retrospective Study of Health Records.Haemophilia : the official journal of the World Federation of Hemophilia · 2025Article
- Psychological support for people with hemophilia and HIV who suffer from cancer: A first national survey.Global health & medicine · 2025Article
- Quality-of-Life Assessment and Pharmacokinetic Study in Hemophilia A Patients Undergoing Prophylactic Treatment.Pharmacy (Basel, Switzerland) · 2025Article
- Joint health status in people with moderate hemophilia A: a cross-sectional multicenter study.Research and practice in thrombosis and haemostasis · 2025Article
- Real-world bleeding rates on emicizumab: the value of using nationwide digital treatment diary data in clinical research.Research and practice in thrombosis and haemostasis · 2025Article
- The spectrum of neutralizing and non-neutralizing anti-FVIII antibodies in a nationwide cohort of 788 persons with hemophilia A.Frontiers in immunology · 2024Article
- Minimum factor VIII levels to prevent joint bleeding in mild hemophilia A.Blood advances · 2023Article
- Patient-relevant health outcomes for von Willebrand disease, platelet function disorders, and rare bleeding disorders: a Delphi study.Research and practice in thrombosis and haemostasis · 2023Article
- The use of infrared thermography for non-invasive detection of bleeding and musculoskeletal abnormalities in patients with hemophilia: an observational study.Thrombosis journal · 2023Article
- Patients' and health care providers' perspectives on quality of hemophilia care in the Netherlands: a questionnaire and interview study.Research and practice in thrombosis and haemostasis · 2023Article
- In patients with hemophilia, a decreased thrombin generation profile is associated with a severe bleeding phenotype.Research and practice in thrombosis and haemostasis · 2023Article
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Authors and funding
17 authors.
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Abstract
introductionWe 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.
methodsData were collected on patient characteristics, treatment, (joint) bleeding, joint impairment, hospitalizations, human immunodeficiency virus and hepatitis C infections, and general health status (RAND-36).
resultsIn 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/
conclusionOur 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.
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