Health-related quality of life in adults with cerebral palsy living in Sweden and relation to demographic and disability-specific factors
(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.
(Less)
- author
- Jarl, Johan LU ; Alriksson-Schmidt, Ann LU and Rodby-Bousquet, Elisabet LU
- organization
- publishing date
- 2019-02-22
- 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
- 2024-09-17 15:28:42
@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}}, }