Conference Coverage
HOUSTON—The degree of helplessness that parents experience about their child’s epilepsy is significantly related to the child’s health-related quality of life, according to research presented at the 70th Annual Meeting of the American Epilepsy Society. “This relationship highlights the importance of taking into account a parent’s ability to cope … and should be an important target when developing interventions for families who have a child with epilepsy,” said Rachael McLaughlin, a research assistant in neuropsychology at Dell Children’s Comprehensive Epilepsy Program in Austin, and colleagues.
Rachael McLaughlin
Prior studies have found that psychosocial factors can play a role in the health-related quality of life of children with epilepsy. Parents’ adaptation to their child’s epilepsy is not often taken into account, however.
Mrs. McLaughlin and her research colleagues at Dell Children’s, William Schraegle, Nancy Nussbaum, PhD, and Jeffrey Titus, PhD, conducted a study using the Illness Cognition Questionnaire–Parent Version (ICQ). The ICQ assesses parents’ thoughts of helplessness, acceptance, and perceived benefits related to the illness. They studied how parental coping relates to a child’s internalizing psychopathology and health-related quality of life in the context of epilepsy.
The researchers analyzed data from 40 patients (23 females) who were seen for a neuropsychologic evaluation at a tertiary pediatric care epilepsy clinic. Parents completed the ICQ, Quality of Life Childhood Epilepsy (QOLCE) questionnaire, and the Behavior Assessment System for Children, Second Edition. They obtained family history of internalizing psychopathology, duration of epilepsy, and maternal education level from medical records. They assessed associations between parental, demographic, epilepsy-specific, behavioral, and functional variables. The researchers then assessed whether independent variables predicted quality of life.
Patients had an average age of 12 and average epilepsy duration of about six years. QOLCE was related to parental helplessness and acceptance on the ICQ, and to internalizing and externalizing psychopathology.
A simultaneous regression model found that parental helplessness and internalizing psychopathology predicted quality of life, with parental helplessness accounting for the most variance above and beyond all other variables. Analysis of variance found that parental helplessness significantly affected QOLCE. When divided by parental helplessness, patients whose parents had high levels of helplessness had significantly lower quality of life than patients whose parents had low levels of helplessness.
—Jake Remaly
