Self-reported quality of life and degree of youth-parent agreement: A long-term follow-up of childhood-onset epilepsy

Klajdi Puka; Mark A Ferro; Carol S Camfield; Simon D Levin; Mary Lou Smith; Samuel Wiebe; Guangyong Zou; Kathy N Speechley

doi:10.1111/epi.16665

Self-reported quality of life and degree of youth-parent agreement: A long-term follow-up of childhood-onset epilepsy

Epilepsia. 2020 Oct;61(10):2254-2264. doi: 10.1111/epi.16665. Epub 2020 Sep 13.

Authors

Klajdi Puka^{1

2}, Mark A Ferro³, Carol S Camfield⁴, Simon D Levin^{2

5}, Mary Lou Smith⁶, Samuel Wiebe⁷, Guangyong Zou^{1

8}, Kathy N Speechley^{1

2

5}

Affiliations

¹ Epidemiology & Biostatistics, Western University, London, ON, Canada.
² Children's Health Research Institute, Lawson Health Research Institute, London, ON, Canada.
³ School of Public Health and Health Systems, University of Waterloo, Waterloo, ON, Canada.
⁴ Paediatrics, Child Neurology, IWK Health Centre, Dalhousie University, Halifax, NS, Canada.
⁵ Paediatrics, Western University, London, ON, Canada.
⁶ Psychology, University of Toronto, The Hospital for Sick Children, Toronto, ON, Canada.
⁷ Clinical Neuroscience, University of Calgary, Calgary, AB, Canada.
⁸ Robarts Clinical Trials, Robarts Research Institute, London, ON, Canada.

PMID: 32924172
DOI: 10.1111/epi.16665

Abstract

Objective: To 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.

Methods: 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. 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.

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), 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.

Significance: 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, although they cannot be used interchangeably, given the large individual differences observed.

Keywords: family; inter-rater reliability; parent proxy; pediatric; self-report.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Adolescent
Adult
Age of Onset
Canada / epidemiology
Child
Child, Preschool
Epilepsy / diagnosis
Epilepsy / epidemiology*
Epilepsy / psychology*
Female
Follow-Up Studies
Humans
Longitudinal Studies
Male
Middle Aged
Parent-Child Relations*
Parents / psychology*
Prospective Studies
Quality of Life / psychology*
Self Report*
Young Adult

Abstract

Publication types

MeSH terms

Grants and funding