Health-related quality of life in adults with cerebral palsy living in Sweden and relation to demographic and disability-specific factors

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Bibtex

@article{de60e089071743288228dd35cafedc2a,
title = "Health-related quality of life in adults with cerebral palsy living in Sweden and relation to demographic and disability-specific factors",
abstract = "Background: The knowledge base on health-related quality of life (HRQoL) in adults with cerebral palsy (CP) is small and inconsistent. Objective: The aim was to study HRQoL in adults with CP stratified on demographic and disability-specific factors using both experience- and hypothetical-based value-sets. Methods: Cross-sectional study based on registry data from the Swedish follow-up program CPUP. The EQ-5D-3L (5 domains; self-care, usual activities, mobility, pain/discomfort, anxiety/depression) was used to measure HRQoL. The Swedish experience-based and the United Kingdom hypothetical-based value-sets were used to calculate the quality-adjusted life-years (QALY), and associations to demographic and disability-specific factors were studied in univariate and multivariate analyses. Results: The sample consisted of 408 adults with CP (189 women, 219 men), 18–73 years (mean age = 27, SD = 10). Approximately half reported no problems on self-care, usual activities, anxiety/depression, and some problems on mobility and pain/discomfort. Using the value-set based on experienced health states resulted in substantially higher HRQoL scores (0.77) compared to the hypothetical-based values (0.54) (when the health state is described to someone not personally experiencing it). Level of functioning and pain were strongly related to HRQoL, with gross motor functioning being a dominating factor. Sex and CP-subtype were not associated with HRQoL in the multivariate analysis. Conclusions: HRQoL was found to be high in this Swedish population of adults with CP although severe pain and reduced functioning was associated with lower HRQoL. The choice of value-set have strong influence on the HRQoL estimations, especially for lower levels of functioning.",
keywords = "Adults, Cerebral palsy, EQ-5D, Health, Quality of life",
author = "Johan Jarl and Ann Alriksson-Schmidt and Elisabet Rodby-Bousquet",
year = "2019",
doi = "10.1016/j.dhjo.2019.02.002",
language = "English",
volume = "12",
pages = "460--466",
journal = "Disability and Health Journal",
issn = "1936-6574",
publisher = "Elsevier",
number = "3",

}