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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
Lund Univ, Dept Clin Sci Malmo, Hlth Econ Unit, S-22100 Lund, Sweden.
Lund Univ, Skane Univ Hosp, Dept Clin Sci Lund, S-22100 Lund, Sweden.ORCID iD: 0000-0001-9430-263X
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, Centre for Clinical Research, County of Västmanland. Lund Univ, Skane Univ Hosp, Dept Clin Sci Lund, S-22100 Lund, Sweden.ORCID iD: 0000-0001-8373-1017
2019 (English)In: Disability and Health Journal, ISSN 1936-6574, E-ISSN 1876-7583, Vol. 12, no 3, p. 460-466Article in journal (Refereed) Published
Abstract [en]

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. 

Place, publisher, year, edition, pages
ELSEVIER SCIENCE INC , 2019. Vol. 12, no 3, p. 460-466
Keywords [en]
Cerebral palsy, Quality of life, Adults, Health, EQ-5D
National Category
Nursing
Identifiers
URN: urn:nbn:se:uu:diva-390085DOI: 10.1016/j.dhjo.2019.02.002ISI: 000471771800017PubMedID: 30837198OAI: oai:DiVA.org:uu-390085DiVA, id: diva2:1340788
Funder
NordForsk, 82866Available from: 2019-08-06 Created: 2019-08-06 Last updated: 2019-08-06Bibliographically approved

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