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How Are Young Epilepsy Patients Doing? A New Survey Suggests What Matters Most to Them

ARTICLE IN BRIEF

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Children with epilepsy who were surveyed responded that it wasn't the seizures that most impacted the quality of their lives, but rather whether they had good social and emotional support from peers and parents and were mentally healthy overall.

When Canadian researchers asked hundreds of children with epilepsy about factors that affected their quality of life, the answers were surprising.

The children indicated that it wasn't the seizures that most impacted the quality of their lives, but rather whether they had good social and emotional support from peers and parents and were mentally healthy overall.

“I think this article highlights the fact that we should be very careful about not dismissing children's perceptions of their lives because we may be missing a very important point of view,” said Nora Fayed, PhD, of McMaster University and University Health Network in Canada and lead author for the study, which was published in the April 3 online edition of Neurology.

Co-author Gabriel M. Ronen, MD, a pediatric neurologist and a professor of pediatrics at McMaster, said doctors treating children with epilepsy tend to focus their attention on asking parents whether their child has had seizure activity since the last appointment and whether there are any bothersome side effects to medications.

Freedom from seizures is a critical goal, Dr. Ronen told Neurology Today, “but seizure control should not be the only goal. I think it is important for clinicians to be aware of the psychosocial needs of their patients and advocate for getting them the comprehensive care they need.”

An editorial that accompanied the study nicely summed up the essence of the findings: “Clinicians are encouraged to look beyond seizures and see the child.”

With more and more people living for a long time with chronic diseases such as epilepsy, quality of life (QOL) issues are coming under more scrutiny from researchers.

While various studies have been conducted to assess quality of life for children with epilepsy, results have been mixed and child self-reports were often not used in the research. “Before asking which variables best explain or predict QOL, we first need to ask children,” the Canadian research team wrote.

MULTIPLE SCREENING TOOLS

The study included 480 children, ages eight to 14, who were recruited from six Canadian pediatric epilepsy tertiary care ambulatory programs. The children could all answer questions in English or French, had had seizures in the previous 12 months or were prescribed medication to control seizures, and had an estimated verbal IQ of at least 70. The average age of the participants was 11.4 years.

A variety of child self-report measures and standardized scales were used for the study and to assess the children's mental health status. The main outcome was QOL measured using the Child Epilepsy Quality of Life Questionnaire, which has 25 items and includes the epilepsy-specific domains of intrapersonal, secrecy, interpersonal, present worries, and normality.

The researchers also had access to information on the children's seizure status, number of antiseizure medications currently used and failed, neurotoxicity side effects, and the functional recovery time of a seizure.

The researchers used a method called structural equation modeling to determine which factors had the most bearing on the children's quality of life.

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DR. NORA FAYED: “I think this article highlights the fact that we should be very careful about not dismissing childrens perceptions of their lives because we may be missing a very important point of view.”

“From the child's perspective, epilepsy-specific QOL is strongly related to their mental health and social support but not to their seizures,” the researchers reported.

Among the findings:

  • Child mental health and peer support have a strong association with QOL.
  • Parental support has both a direct and indirect (via the child's mental health) association with QOL.
  • Estimated verbal intelligence exerts its strongest association with QOL through mental health.
  • Seizure status exhibits a weak relationship to QOL through mental health only.

Dr. Fayed, who is a post-doctoral fellow in health care and outcomes research, said her team's statistical analysis showed that for the group studied, “the total effect (direct and indirect) of psychosocial factors (mental health, parent support, and social support) on QOL is six to 7.5 times higher than the effect of seizures on QOL.”

Her team concluded that “mental health and social support should be areas of focus in the assessment of quality of life. Controlling seizures is insufficient care for influencing the child's perception of their life.”

The researchers said the findings may not necessarily apply to younger children, teens, or children who are not receiving specialized neurology care for their seizures.

DIFFERENT INPUT FROM PARENTS AND CHILDREN

Christine Bower Baca, MD, an assistant professor of neurology at the University of California, Los Angeles, who was not involved with the study, told Neurology Today that the study underscores the fact that “we need to look at treatment more broadly.” Also, while parental input is important for evaluating a child, clinicians need to remember that “kids and parents may not always look at things the same way.” In many instances, parents consider things to be direr than their kids do.

“In a world where doctors are seeing patients as quickly as they can, it's really hard to get every perspective,” said Dr. Baca, who has done research on QOL for children with epilepsy. “But I think we should strive for a fairly balanced approach.”

Epilepsy centers are typically built around a multidisciplinary approach, which more easily allows the neurologist or epileptologist to connect patients and families with a child psychologist, social worker, or other specialist. Intervention on quality of life issues can take many forms — support groups for kids and parents, academic and school-based support, therapy for depression or anxiety — though Dr. Baca said it is not clear which services work best.

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DR. GABRIEL M. RONEN said freedom from seizures is a critical goal, “but seizure control should not be the only goal. I think it is important for clinicians to be aware of the psychosocial needs of their patients and advocate for getting them the comprehensive care they need.”

No doubt “kids need comprehensive epilepsy care,” Dr. Baca said, but “further research is needed to define how best to deliver care and what that care should be.”

ART THERAPY MAY HELP

Carl E. Stafstrom, MD, PhD, a professor of neurology and pediatrics and the Lederer Chair in pediatric epilepsy at Johns Hopkins University in Baltimore, MD, said the latest study was a welcome addition to the epilepsy literature.

“It was a surprising and useful finding that kids themselves may be less concerned with seizures than their parents are, and more concerned about peer relationships,” Dr. Stafstrom said.

He has done research suggesting that art therapy can be a useful tool for helping children with epilepsy express themselves and their concerns. Drawings can also be revealing for those treating the children because they can indicate the child's perception of himself and the world.

Dr. Stafstrom, who has published studies on the subject, said children with epilepsy will sometimes portray having a seizure as “dark, scary, and feeling alone,” an indication that they may be feeling depressed or isolated. He said the new study is reassuring because it suggests that there are measures, in addition to the prescribing of antiseizure medications, that health professionals and families can take to optimize a child's quality of life.

Lawrence Brown, MD, director of the neuropsychiatry program at the Children's Hospital of Philadelphia, said bringing children into the conversation at checkups is also important because one day they will have to manage the disease without their parents' help. It's essential for kids, especially as they approach their teens, to be able to describe symptoms and side effects and to know what medications they take and why.

While clinicians in everyday practice are unlikely to conduct the extensive assessments done for the Canadian study, asking young patients about school, their friends, and their extracurricular activities provides some insight into how they feel and function in the broader world, said Dr. Brown, who is also a professor of neurology and pediatrics at the University of Pennsylvania.

“I still think it's most important to guarantee that seizures are under control and that there are no negative impacts directly from medication,” but that doesn't mean other strategies aren't helpful, he said. He routinely suggests, for instance, that his patients attend epilepsy camp, where they meet other kids with the same condition and learn that they can have epilepsy and still lead an active life.

The Canadian research team is now following the children in their study for an additional 28 months to see if quality of life issues change as the children get older.

EXPERTS: ON CHILDREN'S PERSPECTIVES ON THEIR QUALITY OF LIFE

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DR. CHRISTINE BOWER BACA said the study underscores the fact that “we need to look at treatment more broadly.” She added that while parental input is important for evaluating a child, clinicians need to remember that “kids and parents may not always look at things the same way.”

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DR. CARL E. STAFSTROM said children with epilepsy will sometimes portray having a seizure as “dark, scary, and feeling alone,” an indication that they may be feeling depressed or isolated. He said the new study is reassuring because it suggests that there are measures, in addition to the prescribing of antiseizure medications, that health professionals and families can take to optimize a childs quality of life.

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DR. LAWRENCE BROWN said bringing children into the conversation at checkups is also important because one day they will have to manage the disease without their parents help. Its essential for kids, especially as they approach their teens, to be able to describe symptoms and side effects and to know what medications they take and why, he said.

LINK UP FOR MORE INFORMATION:

•. Fayed N, Davis AM, Streiner DL, et al. for the QUALITE study group. Children's perspective of quality of life in epilepsy http://neurology.org/lookup/doi/10.1212/WNL.0000000000001536. Neurology 2015: Epub 2015 April 3.
    •. Wagner JL, Kellermann TS. Quality of life in pediatric epilepsy: Considerations for measurement and use http://neurology.org/lookup/doi/10.1212/WNL.0000000000001550. Neurology 2015; Epub 2015 April 3.