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

Jarl, Johan LU orcid ; Alriksson-Schmidt, Ann LU and Rodby-Bousquet, Elisabet LU orcid (2019) In Disability and Health Journal 12(3). p.460-466
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... (More)

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.

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author
; and
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
Adults, Cerebral palsy, EQ-5D, Health, Quality of life
in
Disability and Health Journal
volume
12
issue
3
pages
460 - 466
publisher
Elsevier
external identifiers
  • scopus:85062209299
  • pmid:30837198
ISSN
1936-6574
DOI
10.1016/j.dhjo.2019.02.002
language
English
LU publication?
yes
id
de60e089-0717-4328-8228-dd35cafedc2a
date added to LUP
2019-03-11 13:30:01
date last changed
2025-10-14 09:15:00
@article{de60e089-0717-4328-8228-dd35cafedc2a,
  abstract     = {{<p>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.</p>}},
  author       = {{Jarl, Johan and Alriksson-Schmidt, Ann and Rodby-Bousquet, Elisabet}},
  issn         = {{1936-6574}},
  keywords     = {{Adults; Cerebral palsy; EQ-5D; Health; Quality of life}},
  language     = {{eng}},
  month        = {{02}},
  number       = {{3}},
  pages        = {{460--466}},
  publisher    = {{Elsevier}},
  series       = {{Disability and Health Journal}},
  title        = {{Health-related quality of life in adults with cerebral palsy living in Sweden and relation to demographic and disability-specific factors}},
  url          = {{http://dx.doi.org/10.1016/j.dhjo.2019.02.002}},
  doi          = {{10.1016/j.dhjo.2019.02.002}},
  volume       = {{12}},
  year         = {{2019}},
}