Survey Outlines Need for Information on Depression and Mood Disorders

Posted: February 25, 2002

Depression and mood disorders, such as persistent anxiety and feelings that something bad is going to happen, affect people of all ages. Sometimes the feelings go away; sometimes they continue and have to be treated with special medications.

People with epilepsy, especially women, also experience forms of depression, but in many cases, studies show, the problem is not recognized or treated.

Getting information about these issues to people living with seizures and experiencing depression may be the best first step towards diagnosis and, when necessary, treatment.

Last summer, the Epilepsy Foundation asked visitors to its website who had symptoms associated with depression and other mood disorders to fill out a survey on what type of educational materials and services would be most helpful to them.

Slightly over 1,600 surveys were completed. The majority identified themselves as women, Caucasian, employed full or part time, and either had epilepsy themselves or were parents of children with epilepsy.

Printed Information Wanted

Most voted for information in printed form: brochures, newsletters, fact sheets and books. Support groups were also cited as a helpful service, including groups for families because "my epilepsy places a large psychological burden on them."

"I would like information of any kind related to the emotional impact that develops due to epilepsy-related impairments," one woman stated.

Another wanted to know whether it was the epilepsy or the medications to treat it that caused depression or mood disorders or made them worse.

Most people said doctors' offices, clinics or hospitals were their primary sources of information, but many also regard the Internet as a major resource, especially the Foundation's website at www.epilepsyfoundation.org.

The Foundation site was listed first when visitors were asked about places where it was easy to find information, followed by doctors' offices, other websites and local Epilepsy Foundations.

What kinds of information about depression and mood do people want? Coping with epilepsy and its social fallout was most frequently named, followed by materials on the types and causes of mood change.

"I want to know which comes first, the epilepsy or the mood disorders, and how the two are related," one person wrote.

They also want to know whether alternative therapies and treatments might help and they wanted to know more about them. The medical profession also needs information, they said. As one survey taker wrote, "I want help in educating neurologists about mood disorders and epilepsy."

What about the value of information materials already received? Those from healthcare providers were ranked highest, followed by website materials, medical or self help books, online support, toll free services, support groups, seminars and conferences and videotapes.

Public Education Need

Looking to the future, the survey takers said they want to see a broader presence for the Epilepsy Foundation in areas that are currently not served; they want Internet chats and they want more public education on epilepsy.

To others with epilepsy who may be facing emotional difficulties they said: learn about your condition and medication; seek therapy and counseling; seek help when needed, join a support group and live a healthy lifestyle.

"There's obviously significant interest in educational materials addressing mood disorders and epilepsy, at least among those who shared their views with us through the Internet," said Edna Kane-Williams, vice president for Quality of Life Programs and Research, adding that the Foundation is now reviewing how best to respond to the need.

"But education is only half the battle," she continued. "We hope the research community will tell us more about how widespread these problems are, what they're doing to quality of life, and the most effective ways of preventing and treating them."