New Research Program Aims to Improve Quality of Life for Youth with Epilepsy

By Sylvia Blair
Epilepsy USA staff
Posted: July 23, 2003

The growing pains of childhood and adolescence can be difficult enough, but when a child has epilepsy, he or she may suffer added emotional and psychological burdens waiting for the next seizure to come or dealing with other people’s reactions.

The Epilepsy Foundation recognizes that helping youth cope with this chronic disorder is an area of research that needs more attention. That’s why it created the Childhood Quality of Life Research Initiative.

The projects currently funded by the program include research into the mental health aspects of childhood epilepsy, and research into the effectiveness of education and support groups for adolescents with epilepsy.

Epilepsy and Mental Health Care

Previous research shows a high rate of behavioral disorders in children with complex partial and absence seizures, even though they have average or above average intelligence. In many cases, mental health needs go unmet, possibly even undetected by parents and caregivers.

This dilemma made Rochelle Caplan, M.D., curious to find out more. She is professor and director, Pediatric Neuropsychiatry Program, Department of Psychiatry & Behavioral Sciences at the University of California, Los Angeles.

Caplan received a 2002-2003 grant which she titled “Improving the Lives of Children with Epilepsy Project.”

“I am studying children with epilepsy who also show signs of anxiety disorder and depression, among other conditions, to find out why this has been undetected,” Caplan said. “Is the reason because stigma makes parents reluctant to do anything about it, or are they simply unaware of the problem?”

In her study, Caplan is polling pediatric neurologists to get a sense of what their knowledge, beliefs and attitudes are about epilepsy and mental health. Then she will conduct a follow-up educational program targeted to this group.

Secondly, Caplan will conduct focus groups with parents of children with epilepsy, who are of mixed ethnic and educational backgrounds to get a better understanding of parental knowledge of mental health issues.

Finally, she will compile data and run a pilot program in clinic waiting rooms where parents visit. They will be asked to answer questionnaires about their knowledge, beliefs and attitudes of mental health issues, then they will receive educational material on the topic. Afterwards, they will be questioned again to measure any change.

“This is important research because the rate of psychopathology in adults with epilepsy is very high. I believe that early intervention may help prevent children with epilepsy from becoming adults with mental health problems,” Caplan said.

Oh, the Joys of the Teen Years

Parents over the generations have expressed how challenging the teen years can be. Growing from a child into an adult has enough stressors, and having epilepsy only adds to the problems.

Helping teens with epilepsy and their families has received much attention in the past few years, especially through the national Centers for Disease Control and Prevention–funded “Entitled to Respect Initiative” at the Epilepsy Foundation.

Now a researcher will test a special program to see how information first developed for adults and now targeted to teens can improve their lives.

Cheryl Prohaska Shore, R.N., Ph.D., received a 2002-2003 grant, which she titled “Efficacy of the Seizures and Epilepsy Education (SEE) Program on Quality of Life, Seizure Management and Cost Savings for Adolescents with Epilepsy and Their Parents.”

Shore is post-doctoral fellow at the Indiana University School of Nursing in Indianapolis.

This study will assess how well the Seizures and Epilepsy Education program can improve quality of life and seizure management. It will also show whether the program can reduce health care costs and work/school absences. A sample of 60 families, with a least one parent and one teen with epilepsy, are being recruited.

“SEE is a two-day seminar about all aspects of epilepsy, both medical and social. Teens learn what seizures are, how medicine works in the body, why it’s important to take medicine every day, and how lifestyle can affect seizure control,” said Shore.

“Teens get the chance to talk openly about their fears or confusions, like the common fear of dying from a seizure,” she said. “We expect the program will decrease isolation, give teens their lives back, and provide maximum social opportunities.”

“Adolescent quality of life is so important. Through this program, teens can learn to be proactive and parents can learn to understand how to raise an independent young adult,” Shore said.

With the knowledge that families receive from SEE, the result may be less unscheduled physician and emergency room visits related to unexpected seizures or injury from seizures, according to Shore. Another desired result is fewer missed days from school or work.

I Get By With a Little Help From My Friends

Parents of teens wondering why there’s always an empty spot at the dinner table or why the phone is always tied up know how important their teens’ friends can be.

A team of researchers is turning positive peer influence into a study of how support groups can improve quality of life for teenagers with epilepsy.

Joseph D. Ackerson, Ph.D., and Roy C. Martin, Ph.D., received a 2001-2002 grant titled “The Effect of Adolescent Epilepsy Group Therapy on Health Related Quality of Life.”

Ackerson is director, Pediatric Neuropsychology and associate clinical professor, Division of Pediatric Neurology at the University of Alabama at Birmingham in Birmingham, Ala. Martin is associate professor, Department of Neurology at the UAB Epilepsy Center in Birmingham.

The study groups occurred in Fall 2001 and Summer 2002. Recruitment occurred in three separate outpatient clinics resulting in a varied sample pool.

Potential teen group members had to be between ages 13 to 17. They had to be on medicine, with at least one seizure in the last two years. And they had to be willing to participate in screenings and weekly sessions.

Martin said some of the topics were less interesting to the teens and required more effort to engage them in the discussion, such as the medical aspects of epilepsy.

Overall, teens said they found the groups to be informative, humorous and helpful. “The groups helped teens understand what a seizure is, how to tell and who to tell when you have a seizure, and how the brain is involved,” Martin said.

“We found the support groups showed positive improvement for teens in their quality of life ratings at the end of the group sessions and six months later,” he continued.

There were parent groups, too. Parents rated the content of the information presented as “most helpful” and the ability to share their experience with other parents as “second most helpful.”

The researchers concluded that for future support groups, additional handouts about stress management, coping strategies and working with schools would be beneficial to parents and teens.

In order to expand support groups to serve a greater variety of teen populations, future topics should include education for teens with different developmental levels, as well as information on treatments like the ketogenic diet, Vagus Nerve Stimulation therapy, and neurosurgery.

“Also, a lending media library containing videos, DVDs and CD-ROMs on information about seizure types, medications and more could possibly be incorporated into future groups. This would enable parents and teens to gain more understanding about epilepsy,” Martin said.