Self‐reported quality of life and degree of youth‐parent agreement: A long‐term follow‐up of childhood‐onset epilepsy
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AbstractObjectiveTo prospectively delineate self‐reported health‐related quality of life (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.MethodsData 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. Measurers of HRQOL over time were analyzed using a linear mixed‐effect model approach. AYA‐parent agreement was evaluated using intraclass correlation coefficient (ICC) and Bland‐Altman plots.ResultsA 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), although considerable differences were observed at the individual level. AYA‐parent agreement varied with AYA’s and parent's age, seizure control, and family environment.SignificanceIn 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, although they cannot be used interchangeably, given the large individual differences observed.
