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

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.

journal_name

Epilepsia

journal_title

Epilepsia

authors

Ferro MA,Avery L,Fayed N,Streiner DL,Cunningham CE,Boyle MH,Lach L,Glidden G,Rosenbaum PL,Ronen GM,QUALITÉ group.

doi

10.1111/epi.13774

subject

Has Abstract

pub_date

2017-07-01 00:00:00

pages

1277-1286

issue

eissn

0013-9580

issn

1528-1167

journal_volume

pub_type

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