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Epilepsia. 2017 Jul;58(7):1277-1286. doi: 10.1111/epi.13774. Epub 2017 May 9.

Child- and parent-reported quality of life trajectories in children with epilepsy: A prospective cohort study.

Author information

1
School of Public Health and Health Systems, University of Waterloo, Waterloo, Ontario, Canada.
2
Avery Information Services, Orillia, Ontario, Canada.
3
School of Rehabilitation Therapy, Queen's University, Kingston, Ontario, Canada.
4
Department of Psychiatry and Behavioural Neurosciences, McMaster University, Hamilton, Ontario, Canada.
5
School of Social Work, McGill University, Montreal, Ontario, Canada.
6
Department of Pediatrics, McMaster University, Hamilton, Ontario, Canada.

Abstract

OBJECTIVE:

To describe the developmental trajectories of quality of life (QoL) in a large cohort of children with epilepsy, and to assess the relative contribution of clinical, psychosocial, and sociodemographic variables on QoL trajectories.

METHODS:

Five assessments during a 28-month prospective cohort study were used to model trajectories of QoL. Participants were recruited with their parents from six Canadian tertiary centers. A convenience sample of 506 children aged 8-14 years with epilepsy and without intellectual disability or autism spectrum disorder were enrolled. A total of 894 children were eligible and 330 refused participation. Participating children were, on average, 11.4 years of age, and 49% were female. Nearly one third (32%) had partial seizures. At baseline, 479 and 503 child- and parent-reported questionnaires were completed. In total, 354 children (74%) and 366 parents (73%) completed the 28-month follow-up. QoL was measured using the child- and parent-reported version of the Childhood Epilepsy QoL scale (CHEQOL-25).

RESULTS:

Child-reported QoL was fitted best by a six-class model and parent-reported QoL by a five-class model. In both models, trajectories remained either stable or improved over 28 months. Of these children, 62% rated their QoL as high or moderately high, defined as at least one standard deviation above the average CHEQOL-25 score. Greater family, classmate, and peer social support, fewer symptoms of child and parent depression, and higher receptive vocabulary were identified as the most robust predictors of better QoL (all p < 0.001).

SIGNIFICANCE:

Most children with epilepsy and their parents reported relatively good QoL in this first joint self- and proxy-reported trajectory study. Findings confirm the heterogeneous QoL outcomes for children with epilepsy and the primary importance of psychosocial factors rather than seizure and AED-specific factors in influencing QoL. These predictors that are potentially amenable to change should now be the focus of specific intervention studies.

KEYWORDS:

Adolescents; Longitudinal study; Mental health; Patient-reported outcomes; Quality of life; Social support

PMID:
28485850
DOI:
10.1111/epi.13774
[Indexed for MEDLINE]
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