Self-reported quality of life and degree of youth-parent agreement: A long-term follow-up of childhood-onset epilepsy
Abstract number :
173
Submission category :
11. Behavior/Neuropsychology/Language / 11B. Pediatrics
Year :
2020
Submission ID :
2422520
Source :
www.aesnet.org
Presentation date :
12/5/2020 9:07:12 AM
Published date :
Nov 21, 2020, 02:24 AM
Authors :
Klajdi Puka, Western University; Mark A. Ferro - University of Waterloo; Carol S. Camfield - Dalhousie University; Simon D. Levin - Western University; Mary Lou Smith - Hospital for Sick Children; Samuel Wiebe - Cumming School of Medicine, University of C
Rationale:
No studies have prospectively evaluated self-reported health-related quality of life (HRQOL) in the long-term after childhood-onset epilepsy. The objective of this study was to prospectively delineate self-reported HRQOL of adolescents and young adults (AYAs) 8- and 10-years after an epilepsy diagnosis and evaluate the degree of AYA-parent agreement in ratings of AYA’s HRQOL.
Method:
Data came from the Health-Related Quality of Life in Children with Epilepsy Study (HERQULES), a 10-year longitudinal study of children, aged 4-12 years, with newly diagnosed epilepsy. Epilepsy-specific HRQOL was self-reported by AYA 8- and 10-years after diagnosis and by parents at multiple time points throughout the 10-year follow-up. Measures of HRQOL over time were analyzed using a linear mixed effect model approach. Parent-youth agreement was evaluated using intraclass correlation coefficient (ICC) and Bland-Altman plots.
Results:
A total of 165 AYAs participated at long-term follow-up. There was considerable heterogeneity among AYA’s HRQOL, and as a group there was no significant change in HRQOL from the 8- to 10-year follow-up. Household income at the time of diagnosis, seizure control at follow-up, and a history of emotional problems (anxiety/depression) were independent predictors of HRQOL at follow-up. AYA-parent agreement on AYA’s HRQOL was moderate (ICC:0.62, 95%CI 0.51–0.71), though considerable differences were observed at the individual level. AYA-parent agreement varied with AYA’s and parent’s age, seizure control, and family environment.
Conclusion:
In the long-term after a diagnosis of epilepsy AYAs report stable HRQOL over time at the group level, although notable individual differences exist. Seizure control, anxiety/depression, and family environment meaningfully impact AYA’s long-term HRQOL. AYA and parent reports on HRQOL are similar at the group level, though cannot be used interchangeably, given the large individual differences observed.
Funding:
:Canadian Institutes of Health Research (CIHR)
Behavior/Neuropsychology/Language