Progress in Chronic Disease: Self-management for Patients With Epilepsy

Abstract

Epilepsy is a chronic disease. In the United States, 3.4 million persons are affected by seizures and their consequences, representing a serious health burden not only in terms of medical care but also seizure-associated disability. Patients with epilepsy often are stigmatized, and many are prevented from driving or holding meaningful employment. Only about 70% of persons with epilepsy remain seizure-free while receiving treatment with antiseizure medication (1). Seizures may persist even after such interventions as epilepsy surgery or neuromodulation (2). However, the manifestations of epilepsy extend beyond seizures. Patients with epilepsy may have depression and cognitive impairment despite seizure cessation. Among persons with temporal lobe epilepsy, 50% are depressed and 80% have cognitive problems in at least 1 domain (3). This comorbidity often is more disabling than the seizures themselves (4). Self-management programs are a well-established, effective intervention for other chronic diseases, such as diabetes and arthritis, but are a less common approach in neurologic diseases, such as epilepsy. In their systematic review, Luedke and colleagues (5) examined evidence for the efficacy of self-management programs for patients with epilepsy. Many of the studies reviewed, as well as their respective programs, were developed within the Managing Epilepsy Well Network, a thematic research network of the Centers for Disease Control and Prevention that recognizes the dire need for self-management programs for this disease (6). Self-management comprises 6 general domains: knowledge acquisition, stimulation of independent sign and symptom monitoring, medication management, enhancement of problem-solving and decision-making skills for medical treatment management, safety promotion, and changes in health behaviors. Most programs in the included studies addressed knowledge, problem solving, and targeted health behavior changes. The authors categorized self-management programs with sufficient evidence into educational interventions, often in the form of group sessions, and interventions based on psychosocial therapy, such as problem-solving or cognitive behavioral therapy. Educational interventions increased self-management behaviors, whereas psychosocial therapy improved quality of life (QOL). The authors concluded that meta-analysis was difficult because of heterogeneity and high risk of bias among the available studies. The programs tested in the reviewed studies varied in delivery of the intervention as well as in the domains they aimed to address; therefore, the pooled data should be interpreted in light of this limitation. For example, some studies delivered self-management in a group format with peer and professional educators, others used mobile technology for self-monitoring, and others delivered one-on-one telephone-based instruction in self-management focused on problem solving. The interventions studied seem to have addressed very different goals and domains. Programs including psychosocial therapy clearly showed improved QOL. Because demonstrating an increase in QOL is exceedingly difficult with any epilepsy intervention (2), a program that moves the needle to better QOL is a plus. A previous Cochrane review of psychological interventions, which included most of the studies reviewed by Luedke and colleagues, provided moderate evidence for improved QOL but included studies that targeted depression (7). Luedke and colleagues did not note an effect on seizure frequency in the 6 studies that reported seizure counts. Yet, a previous systematic review that included only face-to-face interventions reported positive effects on seizure frequency (8). Seizures are not the only factor leading to disability, so the absence of an intervention s effect on seizure frequency does not negate the benefit of self-management any more than normal blood sugar levels obviate the need to manage diabetic neuropathy. Along this line, self-management programs in epilepsy frequently address comorbid conditions separate from seizure control (9). Luedke and colleagues excluded studies targeting depression and thus did not examine the effect of self-management on mood. Self-management studies in patients with epilepsy and depression have shown good evidence for improving mood and coping skills (9, 10). Too often, researchers and clinicians have focused on seizure outcomes while neglecting mood and cognition, which may be of greater concern to persons with epilepsy (4). It is time we start listening to our patients. The existence of evidence from 13 randomized controlled studies for the efficacy of self-management in epilepsy is noteworthy. A similar body of randomized controlled evidence is not available for other, more invasive epilepsy interventions, such as surgery (2), indicating a dire need to adopt strategies to enhance self-efficacy and self-management skills. The studies examined in the current systematic review enrolled more than 2500 patients, whose demographic characteristics are interesting. For reasons that we can only speculate, the sex distribution and educational level of the study participants differ from those of the overall population of patients with epilepsy. For example, about half of the participants had at least an undergraduate degree, compared with only about one third of the general population. Self-management interventions are underutilized despite the relative low cost and supportive evidence from randomized controlled trials, perhaps because medication, surgery, and devices seem more sophisticated. That the current U.S. health care system does not reimburse providers for self-management education in epilepsy is unfortunate. The hope is that this will change, because it is unclear why more technical but possibly less evidence-based interventions are reimbursed, whereas effective interventions based on human interaction are not. An unrealistically large study population would be needed to demonstrate substantial health care cost savings for an epilepsy intervention, because expensive emergency room visits and hospitalizations are infrequent. That said, measuring the financial effects of improved depressive symptoms, self-confidence, or cognition would be far more difficult. I applaud Luedke and colleagues effort to systematically review the evidence for self-management in epilepsy. My hope is that the growing evidence showing the effectiveness of self-management programs in epilepsy will motivate our health care system to support psychosocial interventions.