Full-Length Original Research
Trajectories of health-related quality of life in children with epilepsy: A cohort study
Article first published online: 30 SEP 2013
Wiley Periodicals, Inc. © 2013 International League Against Epilepsy
Volume 54, Issue 11, pages 1889–1897, November 2013
How to Cite
Epilepsia, 54(11):1889–1897, 2013
- Issue published online: 6 NOV 2013
- Article first published online: 30 SEP 2013
- Manuscript Accepted: 20 AUG 2013
- Canadian Institutes for Health Research. Grant Number: MOP-64311
- Children's Health Research Institute
- Cohort studies;
- Quality of life;
- Risk factors;
- Statistical models
Little is known about subgroups of children with epilepsy who may experience less favorable outcomes over time. The objectives of this study were to document trajectories of health-related quality of life (HRQL) and to identify predictors of the trajectory group in children with new-onset epilepsy.
Data were obtained from the Health Related Quality of Life in Children with Epilepsy Study, a prospective multisite study of children 4–12 years old with new-onset epilepsy followed for 24 months. Health-related quality of life was measured using the Quality of Life in Childhood Epilepsy questionnaire. Trajectories of HRQL were investigated using latent class trajectory modeling. Multinomial logistic regression was used to identify child, parent, and family predictors of HRQL trajectories.
A total of 374 families responded at baseline and 283 (76%) completed the study. Five HRQL trajectories were observed: low-increasing (4%), moderate-decreasing (12%), moderate-increasing (22%), high-increasing (32%), and high-stable (30%). Many children in the low-increasing, moderate-increasing, high-increasing, and high-stable had clinically meaningful improvements in HRQL: 82%, 47%, 63%, and 44%, respectively. In contrast, the majority of children in the moderate-decreasing group (56%) experienced clinically meaningful declines in their HRQL. Factors predicting trajectories were number of antiepileptic drugs prescribed, presence of comorbid behavior or cognitive problems, parent depression, and family functioning and demands.
Results suggested that children with epilepsy are not homogenous but rather consist of groups with different trajectories and unique predictors of HRQL. Problems associated with child behavior and cognition were the strongest predictors identified. Given that several risk factors are modifiable, it is important to examine these as potential targets within a family-centered framework to improve HRQL of children with new-onset epilepsy.