Johan Jarl1, Ann Alriksson-Schmidt2, Elisabet Rodby-Bousquet3. 1. Lund University, Department of Clinical Sciences Malmö, Health Economics Unit, 221 00, Lund, Sweden. Electronic address: johan.jarl@med.lu.se. 2. Lund University, Skane University Hospital, Department of Clinical Sciences Lund, Orthopedics, 221 00, Lund, Sweden. 3. Lund University, Skane University Hospital, Department of Clinical Sciences Lund, Orthopedics, 221 00, Lund, Sweden; Uppsala University, Region Västmanland, Centre for Clinical Research, Västerås, Sweden.
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.
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.
Authors: Silvia Pizzighello; Marianna Uliana; Martina Michielotto; Alda Pellegri; Matteo G F Vascello; Sara Piccoli; Michela Martinuzzi; Andrea Martinuzzi Journal: Front Neurol Date: 2022-09-27 Impact factor: 4.086