Quality of life (QoL) is a primary concern for children with epilepsy and their families. Different factors have been associated with QoL, which means it can be difficult to predict. Dr. Gabriel Ronen and colleagues wanted to investigate why some children with epilepsy report satisfaction with their lives while others do not. If researchers can identify the major factors that influence QoL, they may be able to find ways of improving these aspects to improve overall QoL.
Previous research indicates that when both children and parents are asked to report on the child’s quality of life, they often emphasize different aspects. As a result, for the present study, both child reports and parent reports were examined to provide a more complete picture of QoL. The researchers wanted to know if QoL measures would differ between child and parent reports over time, and which factors (such as seizure frequency, social functioning and cognitive skills) make the largest contribution to QoL.
To answer this question, the authors assessed 506 children between the ages of 8-14 years and followed them over time. Children self-reported their QoL at 5 different timepoints over 28 months. Parent reports were also completed at the same timepoints. QoL was measured using the Childhood Epilepsy QoL Scale (CHEQOL-25), which has 25 questions that assess social consequences, worries and concerns, emotional issues, secrecy, and quest for normality. Children and parents were also asked to report on their own moods at three different timepoints. The researchers took both the child-reported and parent-reported scores at each timepoint and looked for trends over time.
For most children in this study, QoL either remained stable or showed some improvement over 28 months. Almost 66% of children and nearly 75% of parents rated their child’s QoL as “high” or “moderately high”, with 25% of ratings improving over time. For the child-reported scores, the best predictors of good QoL were classmate social support and parental social support. Female children and those with increased child-reported depression scores were more likely to report poorer QoL. Children with a smaller receptive vocabulary (all the words that they can understand and respond to) and whose parents self-reported depressed mood also tended to have poorer QoL over time. Factors such as the number of anti-seizure drugs tried and seizure severity did not contribute as strongly to QoL measures.
The results from this study suggest that social support, particularly classmate and parental support, can protect against poor QoL. Strategies aimed at improving mood and social support networks may promote better QoL for children with epilepsy. These may include cognitive behavioural therapy for depression, parental mental health screening and counselling, and school-based epilepsy education programs to increase awareness and promote positive attitudes among classmates.