Rachelle R Ramsey1, Kristin Loiselle1, Joseph R Rausch1, Jordan Harrison2, Avani C Modi3. 1. Center for Treatment Adherence and Self-Management, Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, 3333 Burnet Ave., MLC 7039, Cincinnati, OH 45229, USA. 2. Thomas E. Cook Counseling Center, Virginia Tech, 895 Washington St. SW, Blacksburg, VA 24061, USA. 3. Center for Treatment Adherence and Self-Management, Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, 3333 Burnet Ave., MLC 7039, Cincinnati, OH 45229, USA. Electronic address: avani.modi@cchmc.org.
Abstract
OBJECTIVE: The objective of this study was 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 postdiagnosis. 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 were 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. The 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.
OBJECTIVE: The objective of this study was 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 postdiagnosis. 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 were 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. The 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.
Authors: Mark Sabaz; John A Lawson; David R Cairns; Michael S Duchowny; Trevor J Resnick; Patricia M Dean; Ann M E Bye Journal: Epilepsy Behav Date: 2003-12 Impact factor: 2.937
Authors: Jane Williams; Chris Steel; Gregory B Sharp; Emily DelosReyes; Tonya Phillips; Stephen Bates; Bernadette Lange; May L Griebel Journal: Epilepsy Behav Date: 2003-12 Impact factor: 2.937
Authors: Bruce P Hermann; Aaron F Struck; Robyn M Busch; Anny Reyes; Erik Kaestner; Carrie R McDonald Journal: Nat Rev Neurol Date: 2021-09-22 Impact factor: 44.711
Authors: Rosa Michaelis; Venus Tang; Sarah J Nevitt; Janelle L Wagner; Avani C Modi; William Curt LaFrance; Laura H Goldstein; Milena Gandy; Rebecca Bresnahan; Kette Valente; Kirsten A Donald; Markus Reuber Journal: Cochrane Database Syst Rev Date: 2020-09-07
Authors: Rosa Michaelis; Venus Tang; Janelle L Wagner; Avani C Modi; William Curt LaFrance; Laura H Goldstein; Tobias Lundgren; Markus Reuber Journal: Cochrane Database Syst Rev Date: 2017-10-27