Networking Helps People with Epilepsy Avoid Depression
Michael Wolske, a volunteer with the Epilepsy Foundation of Michigan, began having seizures when he was an infant. They were mild at first, and his pediatrician told his parents he would probably outgrow them.
“But that didn’t happen with me,” he says. Seizures occurred each month, and Mr. Wolske, now 43, continues to manage a life with epilepsy by using medication and following health guidelines.
Safety regulations exclude him from many types of employment and prohibit him from driving until he has a 6-month seizure-free period, according to Michigan’s driver licensing law. Potential consequences—such as unemployment and social isolation—of these restrictions put Mr. Wolske at risk for depression, a condition that affects many people with epilepsy. Mr. Wolske says he has coped with anger, depression, and even thoughts of suicide for most of his life.
To help people with epilepsy control their disorder and its effects on their life, four of the CDC’s Prevention Research Centers (PRCs) are working together as the Managing Epilepsy Well (MEW) network, led by Colleen DiIorio, PhD, RN, at Emory University.
“The MEW network conducts research and shares findings that can improve the lives of people with this neurologic condition,” Dr. DiIorio says.
MEW Member at the University of Washington:
Adapting PEARLS of Wisdom
At the University of Washington PRC, psychiatrist Paul Ciechanowski, MD, MPH, says people with epilepsy are at risk of developing depression for many reasons. Anti-seizure medications can have sedative side effects that can lead to depression. Brain damage or other problems that can trigger seizures also can change brain chemicals and promote depression. Limitations in employment and some life opportunities, and persistent feelings of hopelessness—which may accompany the lifelong burden of having epilepsy—can lead to depression, too.
“Biological and stress-related factors can raise the risk of depression among people with epilepsy,” Dr. Ciechanowski says. “Remember, you have everything else in life to deal with, plus this condition. It’s a large stressor. And the accumulation of small events can lead to depressive symptoms.”
Several approaches are essential to maximizing epilepsy control, explains Rosemarie Kobau, MPH, MAPP, of CDC’s Division of Adult and Community Health and a CDC representative in the MEW network. First, people with epilepsy need to take their medication as directed. They need to manage the consequences of having seizures, like having plans in place to let coworkers, teachers, and friends know what to do if a seizure occurs, and having a supportive network in place to manage the emotional consequences of having a seizure. And, like most people living with a chronic disease, people with epilepsy need to adopt healthy habits, such as following a good diet, getting physical activity, adequate sleep, and reducing stress. Healthy habits may help people with epilepsy feel better physically and mentally so they can better manage their disorder. But when a person is depressed, continuing these disease management practices may become difficult if energy and motivation dissipate. Then, seizures may become more common, and in a vicious cycle, lead to deeper depression.
“When someone has epilepsy,” Ms. Kobau says, “the biggest predictor for his or her quality of life is not the seizures themselves but whether that person becomes depressed.”
In PRC research, Dr. Ciechanowski is adapting the Program to Encourage Active, Rewarding Lives for Seniors, or PEARLS, which has been shown to be effective in helping older adults reduce minor depression and resulting disability. In this community-based intervention, a clinician, such as a social worker, visits frail older adults in their homes and works with them to gauge depression symptoms, find ways to work through problems, and plan enjoyable activities. In 2006, the CDC Epilepsy Program supported adapting this program for people with epilepsy.
“The whole idea is to be educational and to work together,” Dr. Chiechanowski says.
If a client with epilepsy is experiencing a lot of stress from feeling alone, searching for a job, or another problem, he or she works with the clinician to set goals and brainstorm solutions. Then the client picks the best solution and takes small steps toward resolving the problem. Completing the action plan becomes “homework” to do before the next visit, when client and clinician review progress and the clinician assesses signs of depression. The clinician also works with the client’s primary care physician and neurologist to try to handle situations that may arise. If the client seems to be unsteady on his or her feet or is in a depressed mood during a visit, medications may need to be adjusted.
MEW Members at Emory University and the
University of Texas Health Science Center at Houston:
Developing Healthy Thoughts About Life With Epilepsy
Researchers at the Emory University PRC recently announced having received a National Institutes of Health Challenge Grant to test another approach to helping people with epilepsy avoid depression. The grant of $500,000 annually for two years is part of The American Recovery and Reinvestment Act of 2009.
Principal Investigator Nancy Thompson, PhD, MPH, says the research team will extend testing Project UPLIFT (Using Practice and Learning to Increase Favorable Thoughts), currently being evaluated at Emory, as a depression-prevention program to be evaluated across all MEW sites. The intervention uses cognitive behavioral therapy and mindfulness to help people modify negative thoughts and moods, which may help people with epilepsy gain perspective about their lives and the condition they try to control.
MEW researchers say that traditional care for depression often is delivered in person, such as by a doctor or a support group. But in this research, Dr. Thompson says, the therapy will be administered through the Internet and by telephone so that people with epilepsy can access care without leaving home and the intervention can have greater reach. Preliminary tests suggest Project UPLIFT helps people with epilepsy who already have depression. This new study will determine if remote therapy can be successful for preventing depression in people with epilepsy.
“Project UPLIFT teaches participants to say ‘Here’s what I need to do to manage this condition the best way I can,’” Dr. Thompson says. “It gets participants to notice how they think and then change how they think about epilepsy.”
Study participants will be randomly assigned to receive therapy by telephone or online, in an initial group or delayed group. In the telephone intervention, a facilitator leads participants in a discussion to build stress-reducing skills. Researchers hope the participants will learn new thinking and emotional skills and have more support to help them better cope with living with epilepsy.
Participants receiving the web-based intervention will be able to join discussion boards and access exercises on their own schedule and do them at their own pace. Both the telephone and Web interventions are designed to help participants get to know each other, which Dr. Thompson says, can reduce feelings of isolation.
“Previous studies showed that participants may not have known anyone else who had epilepsy. Getting people together is a helpful part of this therapy; they may connect with people across the country,” she says.
Groups of participants are being recruited from the geographic locations of the four members of the MEW network. Both Ms. Kobau and Dr. Thompson note that having centers work together can enhance a research project. Charles Begley, PhD, a health care researcher working with the PRC at the University of Texas Health Science Center at Houston, says this project will provide basic information about reaching people with epilepsy from different socioeconomic backgrounds; half of the patients the Houston team is recruiting will come from the local public hospital system and the other half are being recruited from a more affluent and racially diverse group of patients who receive treatment at an epilepsy clinic. Dr. Begley and his colleagues will compare the ways members in both groups manage their epilepsy.
MEW Member at University of Michigan:
Controlling Different Chronic Illnesses with Similar Tactics
In MEW network companion projects, researchers at the University of Michigan PRC are on the lookout for skills and tools that can help people with epilepsy manage their disease. Noreen Clark, PhD, says people with asthma and heart disease may be good role models for people with epilepsy.
“Every chronic condition is unique,” she says, “but there are some common challenges and problems people have to overcome, regardless of the illness.”
People who manage their asthma well, for example, are vigilant about monitoring their breathing and avoiding the triggers of an asthma attack. For people with epilepsy, watching for signs of trouble, Dr. Clark says, and adjusting behaviors and developing judgment can help lessen the occurrence of disruptive symptoms so that quality of life improves.
Dr. Clark and colleagues are also interested in the perspectives of clinicians, researchers, and providers of social services. The research team surveyed 100 professionals who help care for people with epilepsy for their perspectives on what patients need to do each day to cope with the disease. Dr. Clark is reviewing the results with the help of the program’s advisory board. Together, they will develop interventions that teach the recommended practices to people with epilepsy.
“We want to make the most of the wisdom that is out there,” she says.
Until more types of support are tested and made available, Mr. Wolske says he has found that keeping detailed records of his seizures, test results, and medications helps him feel in control. The information he keeps can help his doctors track his drug regimen, and a neurologist can interpret how his seizures change over time and suggest which treatments could be most successful.
“Keeping good records is something I would recommend,” Mr. Wolske says. It also helps to read as much as one can about epilepsy. Finding ways to stay busy also helps him cope, he says, whether in his woodshop, with his bee keeping, or doing yard work around his family’s 15-acre property.
“What am I supposed to do?” he asks. “Just sit around at home and get depressed?”