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Wee, E.M. de; Fijnvandraat, K.; Goede-Bolder, A. de; Mauser-Bunschoten, E.P.; Eikenboom, J.C.J.; Brons, P.P.; ... ; WiN Study Grp (2011)

Impact of von Willebrand disease on health-related quality of life in a pediatric population

Article / Letter to editor
Background: Von Willebrand disease (VWD) is the most frequent inherited bleeding disorder. Whether VWD is associated with health-related quality of life (HR-QoL) in children is unknown. Objectives: This nationwide cross-sectional study measured HR-QoL in children with moderate or severe VWD. Our primary aim was to compare HR-QoL of VWD patients with that of reference populations. Additionally, we studied the impact of bleeding phenotype and VWD type on HR-QoL. Methods: HR-QoL was assessed with the Infant/Toddler QoL Questionnaire (0-5 years) and Child Health Questionnaire (6-15 years), and compared with reference population scores. Multivariate analysis was used to evaluate the influence of type of VWD and bleeding phenotype on HR-QoL scores. Results: Preschool children (0-5 years, n = 46) with VWD had lower HR-QoL scores for general health perceptions and parental time than reference populations. School children (6-15 years, n = 87) with VWD had lower scores for physical...Show moreBackground: Von Willebrand disease (VWD) is the most frequent inherited bleeding disorder. Whether VWD is associated with health-related quality of life (HR-QoL) in children is unknown. Objectives: This nationwide cross-sectional study measured HR-QoL in children with moderate or severe VWD. Our primary aim was to compare HR-QoL of VWD patients with that of reference populations. Additionally, we studied the impact of bleeding phenotype and VWD type on HR-QoL. Methods: HR-QoL was assessed with the Infant/Toddler QoL Questionnaire (0-5 years) and Child Health Questionnaire (6-15 years), and compared with reference population scores. Multivariate analysis was used to evaluate the influence of type of VWD and bleeding phenotype on HR-QoL scores. Results: Preschool children (0-5 years, n = 46) with VWD had lower HR-QoL scores for general health perceptions and parental time than reference populations. School children (6-15 years, n = 87) with VWD had lower scores for physical functioning, role functioning - emotional/behavioral, general health perceptions, and physical summary. Type of VWD was associated with HR-QoL in school children for bodily pain, general health perceptions, parental emotion, family activities, and physical summary. Scores of children with type 3 VWD were, on average, 15 points lower than those of the reference population on the above-mentioned scales. A more severe bleeding phenotype was associated with a lower score on 11/15 physical, emotional and social scales. Conclusion: HR-QoL is lower in VWD children than in reference populations, in particular in school children. The negative impact of VWD is sensitive to type of VWD and bleeding phenotype; as well as physical scales, emotional and social scales are affected.Show less
bleeding health-related quality of life pediatrics von Willebrand disease bleeding questionnaire children diagnosis reliability hemophilia validity multicenter netherlands disorders agreement
All authors
Wee, E.M. de; Fijnvandraat, K.; Goede-Bolder, A. de; Mauser-Bunschoten, E.P.; Eikenboom, J.C.J.; Brons, P.P.; Smiers, F.J.; Tamminga, R.; Oostenbrink, R.; Raat, H.; Bom, J.G. van der; Leebeek, F.W.G.; WiN Study Grp
Date
2011-03-31
Journal
Journal of Thrombosis and Haemostasis
Volume
9
Issue
3
Pages
502 - 509
DOI
doi:10.1111/j.1538-7836.2010.04175.x