Comorbidites in Epilepsy

EpilepsyUSA July/August 2007

An eight-year-old boy with epilepsy shows signs of learning problems and is having trouble at school. A 13-year-old girl with complex partial seizures complains of frequent abdominal pain. A 19-year-old whose seizures are well controlled by medication is diagnosed with depression.

As if dealing with the uncertainty and difficulty of epilepsy weren’t enough, many children and teens with epilepsy also experience comorbidities—concurrent medical or psychological conditions of various kinds. Several different types of comorbidities exist in epilepsy. Cognitive comorbidities are learning problems that cause difficulty in school and can have lasting effects on educational and professional success. Psychiatric comorbidities are behavior and mood problems including Attention Deficit Disorder (ADD), depression, anxiety disorders and combinations of these conditions. There are also physical comorbidities, ranging from headaches to ulcers to chronic fatigue. And  there are the psycho-social issues of having to deal with the stigma that surrounds epilepsy, the experience of having seizures in public, the difficulty of peer relationships and the discrimination that people with epilepsy often encounter in schools, jobs, sports and social settings.

Comorbidities create some of the most challenging issues for people with epilepsy and their families. “The packet of having cognitive, linguistic and psychiatric comorbidities makes this a very difficult illness to deal with, even if your seizures are controlled,” says Rochelle Caplan, M.D., professor and director of the Pediatric Neuropsychiatry Program at UCLA. Researchers agree that rates of comorbidities in people with epilepsy are high; some studies show twice the rate of ADD as in the general population, and estimates are that as many as 50 percent of people with poorly controlled or other complicated epilepsies have psychiatric or behavioral comorbidities.

A number of intersecting variables affect who experiences which comorbidities, and how severe their impact is—and it can be extraordinarily difficult to tease these variables apart. Some are basic epilepsy factors: age of onset of seizures, frequency of seizures, duration of treatment, effects of medication and so on. “The earlier the onset of seizures, usually the more severe the seizure disorder, the more difficult to control the seizures are, and the more medications the kids are on,” says Dr. Caplan. "So these are all very confounding variables, all of which can contribute to behavior and cognition.”

Joan Austin, D.N.S., a researcher and professor at the Indiana University School of Nursing who has studied epilepsy comorbidities extensively, believes that seizure frequency is often key. “We do find that the more seizures they have, the more likely they are to have mental health problems,” she says. “And even in the type of seizures that are relatively benign, the kind they outgrow, we find that these children also have behavior problems.”

Yet Dr. Austin also feels that social variables can be enormously important. “We’ve found that families who are fairly organized in the way they approach life—you could almost say the environment’s pretty organized— that those children actually do better at school and behaviorally,” she says. “The family environment is very important. In families who work together, have routines, and the child has rules to follow — not a rigid family, but an organized one — these children are better able to compensate for some of the cognitive deficits and do better than anticipated in school. And children who are in these families also do better behavior-wise; they don’t have as many mental health problems.”

The recent “Curing Epilepsy 2007” conference held at the National  Institutes of Health (NIH) in March highlighted the issue of comorbidities—a clear indication of how central the topic has become in epilepsy research. And in the last several years, the work being done on comorbidities has experienced a paradigm shift that could have enormous consequences for epilepsy itself. It is a chicken-and-egg question. With comorbidities, “the norm has been to assume, to some degree, that a lot of these difficulties are attributable to recurrent seizures and medications and so on,” says Bruce Hermann, Ph.D., professor of neurology at the University of Wisconsin School of Medicine and Public Health, and chair of the Epilepsy Foundation’s Professional Advisory Board. But, he says,  the most recent research indicates that some cognitive and psychological comorbidities actually predate the onset of seizures.

“People with epilepsy, even before they have epilepsy, are more likely to have a variety of things: depression, ADD, migraine, school problems. And these are all things that can be ascertained to have happened before the onset of seizures,” says Anne Berg, Ph.D., an epidemiologist at Northern Illinois University who studies epilepsy. Berg calls these essential comorbidities—conditions that may share an underlying brain pathology with epilepsy. “That’s why I think the NIH was interested in having comorbidities be highlighted this year,” she comments. “Increasingly there’s a sense with this essential comorbidity that it’s not that one condition is causing the other, but maybe they’re caused by the same thing. They’re reflective of the same brain disorder.”

It’s easy to gauge the centrality of comorbidities in the lives of people with epilepsy by the fact that adverse outcomes— psychological, behavioral, social and vocational problems—often persist even among people whose seizures have ended. “If you look at the cross-sectional studies of adults”—including those who no longer have seizures—“the rates of psychopathology are about 80 percent of patients,” says Dr.  Caplan. “The quality of life of these patients is primarily affected by their behavioral problems and their vocational problems and all these other  things, rather than by the presence of seizures.” Dr. Austin finds the same to be true of learning problems in children.

“My research shows that if children with epilepsy are behind at school and then they stop having seizures, they don’t seem to catch up,” she says. “But we don’t really know why. And that’s one of the things we are studying—what would help these children do better at school.” Dr. Berg also agrees. “There may be true ‘essential comorbidities’,” she says. “Even though they’re not having active seizures, even though they may be off medications, this is a group that still has tended to be a bit more depressed, have more learning disorders and other behavioral issues. So they’re a more vulnerable group.” But Berg believes that the right services might make the difference. Of adults who are still experiencing comorbidities from childhood epilepsy, she says, “These were people who maybe needed some extra help when they were younger, some extra understanding, some extra help in school, and didn’t get it.”

By contrast, a group of patients that she currently studies “got lots of help. And maybe we’re going to see that this group actually does quite well, in the long run.” Comorbidities can complicate the struggle many families go through to find appropriate epilepsy care for their children. “One of the big problems for families is identifying an appropriate physician. There are not a lot of epileptologists for children. They are hard to find; a family may not be in the right geographic area,” says Dr. Austin. “And mental health care is really hard to find. Then when parents of a child with epilepsy do find somebody, the psychiatrist or the psychologist may not know anything about epilepsy. And if they go to a doctor who only focuses on the seizures, then these families are struggling on their own with their child’s behavioral and achievement issues. Unfortunately, physicians rarely have a social worker or someone to help families identify resources in the community.”

Dr. Caplan believes that children and teens with epilepsy often fail to get adequate mental health services partially because their parents don’t  know to ask for  them. “The parents don’t know what to request from  their physicians, because they themselves are not getting  the information  that the psychiatric comorbidities  are part and parcel of the disorder,”  she explains. “To  get a psych referral, parents need to initiate that with  the child’s primary care physician and be quite assertive about it, so the parents often need to be educated. They actually know their kids have problems, but they might not be telling the physicians.” Dr. Caplan also  points to  the dearth of appropriately trained psychiatrists and  psychologists available to treat children and adolescents  with epilepsy. 

Mental health professionals, she feels, should be a standard part of epilepsy care. “It’s difficult dealing with epilepsy, just like it’s difficult dealing with diabetes,” she says. “But kids with diabetes get help; there are psychiatric and psychological professionals working on their treatment team. It should be the same  thing for epilepsy.”

Research into comorbidities may hold enormous promise for epilepsy — if, for example, brain imaging can begin to identify underlying pathologies contributing both to epilepsy and to comorbid conditions. For now, Dr.  Caplan stresses prevention. “Early identification of possible risk factors for educational, language,  and behavioral problems, and interventions—that I believe, can turn around the story,” she says. “And it’s never too early. This has to happen from the minute this illness is diagnosed—not just to focus on seizures.  We’ve got to look at the whole picture.” And for Dr. Berg, the important thing—barring the most  severe difficulties that some people with epilepsy face—is to accept the fact of comorbidities, stay positive and keep moving forward. “All of us  have things that are a little off; there’s a range of variability in all of us. And recognizing  what your limitations are just helps you exploit  your  strengths all the more,” she says. “What I’d really  like people who have  pretty well-controlled epilepsy to  realize is that, yeah, there’s some   tough stuff, but just keep going. You’re great people. Live your life.”