Social participation is reduced in type 3 Von Willebrand disease patients and in patients with a severe bleeding phenotype

Eva K. Kempers, Calvin B. van Kwawegen, for the WiN study group, Joke de Meris, Saskia E.M. Schols, Karin P.M. van Galen, Karina Meijer, Marjon H. Cnossen, Johanna G. van der Bom, Karin Fijnvandraat, Jeroen Eikenboom, Ferdows Atiq, Frank W.G. Leebeek*

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

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Introduction: The negative impact of haemophilia on social participation is well established in previous studies, however, the impact of Von Willebrand disease (VWD) on social participation has not been studied. Aim: To compare the social participation of a large cohort of VWD patients in the Netherlands with the general Dutch population. In addition, to identify factors associated with social participation in VWD. Methods: Patients participating in the “Willebrand in the Netherlands” study completed an extensive questionnaire on educational level, absenteeism from school or work, and occupational disabilities. Results: Seven-hundred and eighty-eight VWD patients were included (mean age 38.9 years, 59.5% females), of whom 136 children < 16 years. Adult patients with type 3 VWD more often had a low educational level (52.9%) compared to type 1 (40.2%), type 2 VWD (36.8%) and the general population (36.4%) (p =.005). Moreover, in patients aged ≥16 years the days lost from school and/or work in the year prior to study inclusion differed significantly between the VWD types (p =.011). Using negative binomial regression analysis, the occurrence of bleeding episodes requiring treatment in the year preceding study inclusion was significantly associated with the number of days lost from school and/or work among patients aged ≥16 years. Multivariable logistic regression analysis showed that a higher total bleeding score, older age and presence of at least one comorbidity were significantly associated with occupational disability in patients aged ≥16 years. Conclusion: Our study shows that social participation was lower in type 3 VWD and VWD patients with a more severe bleeding phenotype.

Original languageEnglish
Pages (from-to)278-285
Number of pages8
Issue number2
Publication statusPublished - Mar 2022

Bibliographical note

This study was supported by research funding from the Dutch Haemophilia Foundation (Stichting Haemophilia) and CSL Behring (unrestricted grant).

Publisher Copyright:
© 2021 The Authors. Haemophilia published by John Wiley & Sons Ltd.


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