期刊
DISABILITY AND HEALTH JOURNAL
卷 12, 期 3, 页码 460-466出版社
ELSEVIER SCIENCE INC
DOI: 10.1016/j.dhjo.2019.02.002
关键词
Cerebral palsy; Quality of life; Adults; Health; EQ-5D
类别
资金
- Stiftelsen Sunnerdahls Handikappsfond [19/16]
- Norrbacka-Eugeniastiftelsen [828/16]
- NordForsk [82866]
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. (C) 2019 The Author(s). Published by Elsevier Inc.
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