Long-Term Quality of Life Trajectories Among Individuals Diagnosed With Epilepsy in Childhood
Abstract number :
3.391
Submission category :
11. Behavior/Neuropsychology/Language / 11B. Pediatrics
Year :
2018
Submission ID :
501384
Source :
www.aesnet.org
Presentation date :
12/3/2018 1:55:12 PM
Published date :
Nov 5, 2018, 18:00 PM
Authors :
Klajdi Puka, Western University; Mark A. Ferro, University of Waterloo; Carol Camfield, Dalhousie University and the IWK Health Centre; Simon D. Levin, Western University; Mary Lou Smith, University of Toronto and the Hospital for Sick Children; Samuel Wi
Rationale: Past studies evaluating quality of life (QOL) in the long-term for children with epilepsy have been cross-sectional, and unable to assess to changes in QOL over time since diagnosis. This study prospectively followed children with newly-diagnosed epilepsy over 10 years to identify distinct trajectories of QOL and associated prognostic factors. Methods: Data came from the Health-Related Quality of Life in Children with Epilepsy Study (HERQULES), a prospective cohort study of children (aged 4-12 years) with newly-diagnosed epilepsy. Pediatric neurologists reported on clinical factors and comorbidities. Parents reported on children’s QOL using the QOLCE-55 (validated for youth up to 18 years of age) at diagnosis, and 0.5, 1, 2, and 8 years later. Youth self-reported on QOL at the 10-year follow-up using QOLIE-AD-48 or QOLIE-31. QOL scores range from 0 to 100, with higher scores indicative of better QOL. Latent class growth models were used to 1) identify trajectories of parent-reported QOL over the first 8 years after diagnosis and 2) to estimate youth’s self-reported QOL at the 10-year follow-up, for each trajectory group. Multinomial logistic regression was used to identify child, parent, and family factors associated with each trajectory. Results: A total of 367 families were included. At the 10-year follow-up, 68% of youth had been seizure-free for the past five years. Five unique trajectories of QOL were identified: 11% were characterized as ‘Low-Stable’ (QOLCE scores of 48 at diagnosis, and 0.5, 1, 2, and 8 years; QOLIE scores at 10 years: 60), 19% ‘Low-Increasing’ (QOLCE: 62 to 73; QOLIE: 75), 14% ‘Intermediate-Decreasing’ (QOLCE: 73 to 57; QOLIE: 71), 43% ‘Intermediate-Increasing’ (QOLCE: 78 to 86; QOLIE: 78), 14% ‘High-Increasing’ (QOLCE:87 to 90; QOLIE: 88). Absence of cognitive problems (p=.001) and fewer family stressors/demands (p=.007) at time of diagnosis were associated with better QOL trajectories. Conclusions: Children with epilepsy are not a homogenous group and showed distinct trajectories of QOL over the long-term. Interventions that address epilepsy-related comorbidities and support families to reduce stress early may help individuals diagnosed with epilepsy in childhood achieve more favourable QOL into young adulthood. Funding: Canadian Institutes of Health Research