What Factors Have the Greatest Effect on Quality of Life in Children with Epilepsy?

During a platform session at the 43rd Annual Child Neurology Society Meeting, held in Columbus, OH, October 22-25, Nora Fayed, PhD, et al. presented “Quality of Life in Children with Epilepsy From the Kids’ Point of View,” featuring results from a study that focused exclusively on self‐reported quality of life (QoL) among children diagnosed with epilepsy. The study used a conceptual approach to explore the relationships among seizure and medication variables, comorbidities, and child and social factors, relative to QOL and relative to each other.

The authors noted that “the effects of epilepsy can influence biological, psychological and social life in children and youth, and later when people with epilepsy become adults. There is conflicting evidence in children with epilepsy as to what degree seizures have an impact on quality of life (QoL) from the child’s point of view.”

Acknowledging that QoL means different things to different people, the authors used a definition that is consistent with the World Health Organization’s position that QoL is “an individual’s perception of [his/her] position in life… in relation to their goals, expectations, standards and concerns.”

For the study, researchers used data from the QUALITE longitudinal study of patient reported outcomes in children with epilepsy. To participate in the study, patients had to be 8‐14 years old at baseline, possess the ability to self‐report information about their condition (estimated verbal IQ>70), have active or medication‐managed epilepsy, and understand English or French.

The researchers measured a range of variables, including seizure and medication status, verbal IQ, mental health indicators (overall mood, depression, anxiety, attention, maladaptive conduct, and adaptive conduct), parental support, peer support and attitudes, and epilepsy‐specific QoL.

The study enrolled 480 children (248 males, 232 females) who presented with a range of seizure types (16% simple partial, 38% complex partial, 37% tonic clonic, 31% absence, 5% myoclonic). Fifty-seven percent had had at least one seizure in the last 12 months, 17% had a seizure within the last 24 months, 19% were inactive but on medications. Two-thirds of the children were in regular classes, 28% were in special needs classes at least part of the time, and5% were in “fully modified” classes.

Seventy-one percent of the children were taking one seizure medication, 17% were taking 2 medications, and 5% were on more than 2. More than half of the children (54%) had not previously failed treatment with seizure medication, 21% had failed one prior form of treatment, and 23% had failed more than one. The two most common medications prescribed for this cohort were carbamazepine and oxcarbamazepine (30%) and valproate (29%).

Three-quarters of the children lived with their nuclear family, 8% had parents who were divorced or separated, 8% lived with “reconstituted” families, and 9% lived with a single parent. Maternal education level was high, with 70% having graduated from a college or university. More than 60% of children lived in households with annual income of $60,000 or more. Three-quarters of the children spoke English at home, 20% spoke French, and 5% spoke some other language.

Analysis of these data found that peer support, parental support, and mental health had the greatest effect on QoL, with seizure status exerting “a weak, indirect effect on QoL only through the child’s mental health.”

In their conclusions, the authors wrote “There are many potential gains from understanding the children’s own perspective of their QOL including the fact that epilepsy-specific QOL is strongly related to psychosocial factors and is unrelated to actual seizure status.” In children and with epilepsy, “psychosocial factors such as parental and peer support as well as child mental health should be an area of focus in their assessment.”

The potential targets for intervention “need to reflect the children’s own perspectives rather than relying solely on parental reports.” Targets for improving the child’s perception of life “can occur by improving mental health through supportive parents and peer acceptance but these causal relationships need to further be tested among subgroups and longitudinally.”