Social participation is reduced in type 3 Von Willebrand disease patients and in patients with a severe bleeding phenotype. Issue 2 (29th December 2021)

• Record Type: Journal Article
• Authors: Kempers, Eva K.; van Kwawegen, Calvin B.; de Meris, Joke; Schols, Saskia E. M.; van Galen, Karin P. M.; Meijer, Karina; Cnossen, Marjon H.; van der Bom, Johanna G.; Fijnvandraat, Karin; Eikenboom, Jeroen; Atiq, Ferdows; Leebeek, Frank W. G.
• Is Part Of: Haemophilia. Volume 28:Issue 2(2022)
• Page Start: 278
• Page End: 285
• Publication Date: 2021-12-29
• Subjects: absenteeism -- bleeding -- cross‐sectional studies -- educational status -- social participation -- von Willebrand Diseases; Hemophilia -- Periodicals; 616.1572005
• DOI: 10.1111/hae.14475
• Languages: English
• ISSNs: 1351-8216

Abstract

Abstract: 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.