Findings indicate that people with epilepsy report a substantially lower physical and mental health-related quality of life (HRQOL) than do those without epilepsy. The impact of epilepsy on overall health was revealed in two recent studies, which also disclosed a high number of days with depression and anxiety, suggesting that this population has high levels of anxiety and low levels of life fulfillment.

As reported in the January 19 Morbidity and Mortality Weekly Report, results of a population-based telephone survey in Texas indicate that 45.9% of respondents with epilepsy reported fair or poor health compared with 18.5% of respondents without epilepsy.

In a separate survey of epilepsy patients and their caregivers, nearly half of the patients reported that their seizure medications caused side effects; two thirds of that group further reported that medication side effects negatively affected their quality of life. In this survey, patients with epilepsy defined quality of life as seizure freedom, yet nearly three quarters of the respondents reported continued seizures despite medication.

TEXANS WEIGH-IN ON THE CONSIDERABLE IMPACT OF EPILEPSY

A question about epilepsy included in the 1998 Texas Behavioral Risk Factor Surveillance System (BRFSS), a self-reported physical and mental HRQOL measure, gauged the impact of epilepsy on people with the disorder to be more considerable than previously believed. "Because there was one question in there about epilepsy, they were able to pull out this information in a statistically valid, scientific study—an epidemiologic survey of epilepsy and its impact on life," said Rodney A. Radtke, MD. Dr. Radtke is the Director of the Duke Epilepsy Center and a Professor in Neurology at Duke University Medical Center, Durham, North Carolina. The BRFSS is an ongoing, state-based survey that tracks the prevalence of key health and safety-related behaviors and characteristics.

The survey included four self-rated questions designed to measure HRQOL. Survey participants responded to queries about their general health status, number of days during the preceding 30 when physical health was not good, number of days during the preceding 30 when mental health was not good, and the number of days during the preceding 30 when activity was limited as a result of poor physical or mental health. Unhealthy days were considered the total number of days when physical and mental health were not good, with the total not exceeding 30 days. Participants also noted activity limitations and number of days of pain, depression, anxiety, insufficient sleep or rest, and overall vitality during the preceding 30 days.

Of the 3,355 Texas residents who participated in the survey, 1.8% reported having epilepsy; persons with epilepsy were defined as those who reported having been told by a doctor that they had epilepsy or a seizure disorder. They did not differ in age and sex from those without epilepsy. Compared with those without epilepsy, respondents with epilepsy reported 4.4 more physically unhealthy days, 5.2 more mentally unhealthy days, 6.4 more overall unhealthy days, 4.0 more recent activity limitation days, 6.8 more days of pain, 5.6 more days of depression, 5.2 more days of anxiety, 3.5 more days of insufficient sleep or rest, and 3.3 fewer days of vitality in the 30 days preceding the survey.

"These statistics were also quite sobering in that those who reported having epilepsy identified 12 of the previous 30 days either as bad physical or mental health," said Dr. Radtke. "And so, I think it points out very clearly that half of those are physical health problems and the other half are mental health problems. And that's not surprising to those of us who care for patients with epilepsy because the burden of the disease is not only the seizures, but also the loss of control. You cannot predict when the disease will strike, you cannot predict 'is today a good day or bad day', so you live with that uncertainty," he explained.

These findings are comparable with the number of unhealthy days among BRFSS respondents from eight other states with arthritis, heart problems, diabetes, and cancer.

PAIN AND DEPRESSION

"The thing that surprised me … was the degree of pain [indicated by respondents], because pain is not particularly a part of epilepsy. You may fall and hurt yourself, but a lot of times pain and depression go hand-in-hand. Depression predisposes you to pain, sensitizes you to pain and to headaches and other sorts of pain. So, whether it's a psychological predisposition or a true physical injury is not addressed in this study. Yes, these people are more worried; yes, they're more depressed; yes, they may not be full of energy due to medications, but the pain was a surprising point to me," explained Dr. Radtke. But those not familiar with epilepsy may be surprised by the degree to which the disease affects people's overall quality of health, he believes. Additional study is needed to determine whether the high number of reported days with pain in persons with epilepsy is a result of seizure severity, injuries from seizures, unintended effects of anticonvulsant medication, or other factors.

Depression was another surprising finding, according to Dr. Radtke. "One of the things that predisposes to depression is loss of control. When you're at work, and you control your work environment, you feel good about your job. When you feel like a pawn being manipulated at your work, then you're not happy with your job. And that's what life has dealt these people with unpredictable, episodic seizures—a loss of control."

INDUSTRY DATA CONCURS

A separate nationwide telephone survey of 900 persons with epilepsy and their caregivers, sponsored by UCB Pharma, Inc, found that 70% still experience seizures although being treated with medication, and 68% have side effects from medication that affects their daily lives. "And despite this kind of poor quality of life illustration by those statistics, over half of patients with epilepsy remain reluctant to change their therapy, partly due to their previous experiences in which they tried to change medications but bought into more seizures or more side effects," Dr. Radtke commented. "Much of the population with epilepsy is accepting of 'this is the best I can do and I'm not going to rock the boat.' "

That survey was conducted as part of an epilepsy education campaign, explained Dr. Radtke, the purpose of which was twofold: to increase public awareness of epilepsy so that an individual with epilepsy is not subjected to the stigma of epilepsy, and secondly, to reach patients with epilepsy and encourage them not to accept the limited quality of life many of them have.

The findings generated from these studies should urge patients to seek better care, and also underscore the need to educate the public as to what epilepsy is or can be. "People with epilepsy are normal 99% of the time, then have these events superimposed upon them," said Dr. Radtke. The quality of life for many people with epilepsy could be greatly improved if the myths surrounding the disorder were dispelled, and the availability of new medications with better profiles and efficacy were made known.

NR

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