Health-related quality of life in rare bleeding disorders: results from the Rare Bleeding Disorders in the Netherlands study
Overall HRQoL in patients with RBDs was comparable to the Dutch reference population. Within the RBiN population, a history of heavy menstrual bleeding, clinical bleeding phenotype, patient-reported disease severity, and ISTH-BAT scores were associated with impaired HRQoL, reflecting disease burden in patients living with RBDs.
Authors
- Paul L. den Exter (ORCID: https://orcid.org/0000-0002-1543-5731)
- Joline L. Saes (ORCID: https://orcid.org/0000-0003-3219-4981)
- Marjon H. Cnossen (ORCID: https://orcid.org/0000-0003-1557-2995)
- Saskia E.M. Schols (ORCID: https://orcid.org/0000-0003-2423-2829)
- Laurens Nieuwenhuizen (ORCID: https://orcid.org/0000-0002-0494-9374)
- Sterre P E Willems (ORCID: https://orcid.org/0000-0002-8137-501X)
- Nick van Es (ORCID: https://orcid.org/0000-0001-5256-6346)
- Karina Meijer (ORCID: https://orcid.org/0000-0001-9447-0465)
- Nicole M. A. Blijlevens (ORCID: https://orcid.org/0000-0002-1801-2072)
- Ilmar C. Kruis (ORCID: https://orcid.org/0000-0003-4118-4670)
- Waander L. van Heerde (ORCID: https://orcid.org/0000-0001-7101-8775)
Institutions
- University Medical Center Groningen (NL)
- Radboud University Nijmegen (NL)
- Utrecht University (NL)
- Leiden University Medical Center (NL)
- Radboud University Medical Center (NL)
- Máxima Medisch Centrum (NL)
- Erasmus MC - Sophia Children’s Hospital (NL)
- Amsterdam University Medical Centers (NL)
- The Patients Association (GB)
- University of Amsterdam (NL)
Publication Details
- Journal
- Research and Practice in Thrombosis and Haemostasis
- Published
- 2025-06-27
- DOI
- https://doi.org/10.1016/j.rpth.2025.102961
- Citations
- 1
- Primary Topic
- Systemic Sclerosis and Related Diseases
- Type
- article
- Field-Weighted Citation Impact
- 1.47