Seizures Not Main Driver of QoL for Kids With Epilepsy

Pauline Anderson

October 28, 2014

COLUMBUS, Ohio — When it comes to quality of life, it's not seizure severity or medication status that has the biggest effect on children with epilepsy but rather psychosocial factors, new research suggests.

The results could have important implications for managing these young patients, researchers say.

"For children and youth with epilepsy, psychosocial factors such as parental and peer support as well as a child mental health should really be an area to focus on in daily clinical assessment," said study author Gabriel Ronen, MD, professor, pediatrics, McMaster University, and pediatric neurologist, McMaster Children's Hospital, Hamilton, Ontario, Canada. 

"Potential targets for intervention need to reflect the child's own perspectives rather than relying only on parental reports."

Dr. Ronen presented this research at the Child Neurology Society (CNS) 2014 Annual Meeting.

Conflicting Evidence

According to background information in the report, epilepsy can have a biological and psychological impact on a child and can also affect the child's social life. But until now, there has been conflicting evidence on how much the seizures themselves affect quality of life from the child's point of view.

The study included 480 children (248 males and 232 females) aged 8 to 14 years from six tertiary centers across Canada who had an IQ of 70 or higher. These children had either sustained a seizure within the previous 2 years or were taking medication for seizure management.

The children completed eight health questionnaires during two visits. Researchers gathered information about the children's mental health, cognition, and supports.

Of these children, 16% had simple partial seizures and 38% had complex partial seizures, 37% had primary or secondary tonic-clonic seizures, 31% had absence seizures, and 5% had myoclonic seizures.

At school, 67% of the study sample attended regular classes, 28% attended regular classes but with some partial assistance, and 5% were in fully modified classes.

As for seizure medication, 6% of the youngsters were not taking any, 71% took one medication; 17% took two medications, and 5% took more than two drugs.

Over half of the children (54%) had no medication failures, while 21% had failure of one medicine; in 23%, more than one drug had failed. Almost a third of the study sample (30%) used carbamazepine or oxcarbazepine and 29% were receiving valproate.

Family Structure

Many of the children were from stable, educated, fairly affluent families, commented Dr Ronen. Three quarters (75%) were "nuclear" families, 70% of mothers had college or university education, and 62% of the families had a yearly income of at least $60,000, he said. Only 5% were receiving social assistance.

The researchers used a conceptual approach to explore the direct and indirect relationships among seizure and medication variables, epilepsy comorbidities, and social factors relative to quality of life, as well as relative to each other. This analytical approach used what Dr Ronen called "structural equation modeling" of quality of life, which involves a series of specific statistical steps.

"The goal is to assess the relative contribution of a large number of variables in a single measurement model," he said.

On one side of this model is the quality-of-life outcome. In the center is a column with biological impairments and child factors (including verbal IQ, child mental health, and seizure and medication status). On the other side are the social determinants of peer support and parental support.

For their analysis, quality of life was defined as "an individual's perception of his or her position in life, in relation to his or her goals, aspirations, standards and concerns," Dr Ronin said.

The analysis showed that mental health had an important correlation with quality of life (a coefficient of 0.27). Peer support was directly correlated with quality of life (coefficient of 0.35) and indirectly correlated with quality of life through child mental health (coefficient of 0.28).

"It was a little bit the other way around with parental support," commented Dr. Ronen. The coefficients were 0.19 for a direct correlation and 0.35 for an indirect correlation through mental health.

Verbal IQ had only "a rather modest" correlation with quality of life, both direct and indirect, he said.

Seizures and medication status had "practically no direct correlation" with quality of life (coefficient of –0.03) and "only a modest correlation through the child mental health," said Dr Ronen.

Think Holistically

Commenting on the study for Medscape Medical News, session co-chair Joshua Bonkowsky, MD, PhD, assistant professor, pediatric neurology (pediatrics) and neurology, University of Utah, Salt Lake City, said the new research is very helpful for clinicians.

"Most studies have focused on just treatment of kids, with medicines, MRIs and diagnostic tests, whereas Dr Ronen's work really emphasizes how important it is to look at family structure and family support," said Dr. Bonkowsky. "We have to move beyond just a purely kind of medicinal approach and think more holistically."

The results underline the need to get kids' own impressions of how they're doing in life, he said. "Having a good family support network and having good peer support is making a big difference in how they feel about themselves and how they perceive their epilepsy."

Focusing on quality of life in all childhood neurologic illnesses, not just epilepsy, is gaining more attention, he added. "Dr Ronen is probably ahead of the curve, and the rest of us just need to catch up with him in terms of the other neurological diseases."

The research was supported by the Canadian Institutes of Health Research and the Department of Social Services of the province of Quebec. Dr Ronen has disclosed no relevant financial relationships.

Child Neurology Society (CNS) 2014 Annual Meeting. Platform Session 2-2. Presented October 23, 2014.


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