Predictors of trajectories of epilepsy-specific quality of life among children newly diagnosed with epilepsy

Abstract

Objective To identify two year trajectories of epilepsy-specific health-related quality of life (HRQOL) among children newly diagnosed with epilepsy and to evaluate the predictive value of a comprehensive set of medical, psychosocial, and family factors. Methods Ninety-four children with epilepsy (8.14 ± 2.37 years of age and 63% male) and their caregivers participated in this study. Caregivers completed the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE) and measures of psychological and family functioning at one month post-diagnosis. The QOLCE was also given at eight additional time points during the subsequent two years as a part of a large observational study in children with epilepsy. Adherence data was collected via MEMS TrackCaps and medical information was collected through chart review. Results Unique trajectories were identified for the overall QOLCE scale, as well as the subscales. Most trajectory models for the QOLCE subscales contained at least one at-risk trajectory for children, indicating that there is a subgroup of children experiencing poor long-term HRQOL. Health-related quality of life trajectories remained predominantly stable during the two year period following treatment initiation. Number of AEDs, Internalizing Problems, and Externalizing Problems emerged as the most consistent predictors across the HRQOL domains. Significance Medical and psychosocial interventions, such as cognitive-behavioral strategies, should target modifiable factors (e.g., internalizing symptoms, externalizing symptoms, number of AEDs trialed) shortly after diagnosis to improve HRQOL for children with epilepsy over the course of their disease.

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

“…Stable trajectories were also observed in a study of children aged 2–12 years newly diagnosed with epilepsy using parent‐reported generic and epilepsy‐specific measures of outcomes. The number of trajectory classes was higher in our study (five vs. four and three, respectively); however, the distribution of trajectories as “low,” “average/moderate,” and “high” QoL was consistent.…”

“…Significantly, our study identified social support as predictive of most QoL trajectories. This variable has been examined rarely in previous studies …”

“…Longitudinal studies of parent-reported outcome measures in children with new-onset epilepsy have shown positive outcome trajectories that were either stable or improving over 2 years. [5][6][7] Furthermore, these studies identified child behavior, mood and cognition, antiepileptic drug (AED) variables, family functioning and stress, as well as parental psychological distress as major predictors of child outcomes. Thus, for parents, a constellation of psychosocial and clinical factors is important to the perception of high QoL attainment in their children.…”

Psychological treatments for adults and children with epilepsy: Evidence‐based recommendations by the International League Against Epilepsy Psychology Task Force

“…Even a single seizure is associated with reduced HRQOL . Several factors contribute to poor HRQOL, especially when seizure freedom cannot be achieved, including medication side effects, the number of antiepileptic drugs (AEDs), psychological symptoms (eg, depression), and psychosocial difficulties (eg, unemployment) …”

“…1 Even a single seizure is associated with reduced HRQOL. 2 Several factors contribute to poor HRQOL, especially when seizure freedom cannot be achieved, including medication side effects, [3][4][5] the number of antiepileptic drugs (AEDs), 4,6 psychological symptoms (eg, depression 7,8 ), and psychosocial difficulties (eg, unemployment). 9 Given the significant impact that psychosocial factors and epilepsy treatments can have on the HRQOL of individuals with epilepsy and their families, there is great clinical interest in the role of psychological evaluation and treatments to improve HRQOL.…”