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

• Published in: Haemophilia : the official journal of the World Federation of Hemophilia 2022-03, Vol.28 (2), p.278-285
• Main Authors: Kempers, Eva K., Kwawegen, Calvin B., Meris, Joke, Schols, Saskia E. M., Galen, Karin P. M., Meijer, Karina, Cnossen, Marjon H., Bom, Johanna G., Fijnvandraat, Karin, Eikenboom, Jeroen, Atiq, Ferdows, Leebeek, Frank W. G.
• Format: Article
• Language: English
• Subjects: absenteeism; Adolescent; Adult; Bleeding; Cross-sectional studies; educational status; Female; Hemophilia; Hemorrhage - complications; Humans; Male; Original; ORIGINAL ARTICLES; Participation; Patients; Phenotype; Phenotypes; Regression analysis; Social Participation; von Willebrand Disease, Type 1 - complications; von Willebrand Disease, Type 3 - complications; von Willebrand Diseases; von Willebrand Diseases - complications; von Willebrand Factor - genetics
• ISSN: 1351-8216; 1365-2516
• DOI: 10.1111/hae.14475

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