There is a pressing need for effective interventions aimed at enhancing psychological well-being and self-management for epilepsy patients.
Epilepsy is more than just seizures. Many epilepsy patients also have a psychiatric cormorbidity, such as anxiety or depression. Psychiatric disorders can be identified in 25–50% of patients with epilepsy.1
Consider these two cases shared during Monday’s Special Interest Group meeting for cognitive and behavioral treatments at the 70th annual meeting for the American Epilepsy Society:
• A mother of two school-age children who fears how her children will react when she has a seizure. “Once I warned them ‘Mummy is now starting to seize’…The children ran away screaming. Afterwards one of the them asked: ‘Mummy, do you have to die?’"
• A 3-year-old girl, who is one-month into treatment with carbamazepine. Her parents report noticeable behavioral changes. She shows signs of increased fatigue, noncompliance, hyperactivity, aggression and irritability.
Both cases underscore the need for effective interventions aimed at enhancing psychological well-being and self-management for epilepsy patients, said session panelists, members of the International League Against Epilepsy’s Psychobehavioral Task Force.
At the session, ILAE committee members presented the results of their recent Cochrane review-a systematic study of 22 randomized, controlled trials using health related quality of life (HRQOL) as their primary outcome.
“HRQOL is predicted by psychological parameters, such as fear of seizures, isolation and perceived stigma, AND medical parameters such as medication side effects and seizure count,” said study author Rosa Michaelis, MD, of the Department of Psychiatry at St. Marien Hospital in Hamm, Germany. “Since psychological interventions mainly target these psychological parameters, this parameter seems more appropriate to measure outcomes of complex psychological interventions. Furthermore, some studies indicate that psychological parameters seem to have a bigger influence on HRQOL than seizure count.”
The researchers grouped interventions into categories of psychological interventions, self-management, adherence, education programs, and combined interventions. Interventions using cognitive behavioral therapy and epilepsy-specific education were the most studied.
Their results showed that interventions matter. They found that the mean change from baseline of overall quality of life measured an average of 6.5 points higher in the intervention group than in the control group. Levels of energy measured 6.9 points higher. And emotional well-being was 7 points higher than the control group.
Michaelis hopes the results will be a resource for clinicians and draw attention to the need for more clinical trials. The need is especially acute for children, for which very little data in available, said colleague Avani Modi, PhD. Modi directs the Center for Adherence and Self Management at Cincinnati Children’s Hospital Medical Center.
Only 3 of the 8 adult studies in the Cochrane review’s meta-analysis included adolescents and young adults. No pediatric subgroup analyses could occur because the pediatric studies employed different HRQOL outcomes. And young children were not represented.
However, when using different outcome measures than HRQOL, there are evidence-based interventions for attention deficit hyperactive disorder, oppositional defiant disorder, depression, anxiety, and medication adherence. An additional 17 intervention studies broadly focused on epilepsy management and coping.
Modi said pediatric intervention studies are plagued by limitations. Small sample sizes, less rigorous designs, outcome measures that don’t match the focus of intervention, and lack of multi-site studies are common. In terms of care, issues with insurance coverage, lack of services, and stigma prevent many epilepsy patients from getting the help they need. Modi has had some success breaking through these barriers by integrating pediatric psychology services into the hospital’s epilepsy clinic.2
She challenged the audience to ask themselves, “Why are we so behind in epilepsy relative to other diseases?”
There are many opportunities for investigation, agreed panelist W. Curt LaFrance, MD, director of neuropsychiatry and behavioral neurology at Rhode Island Hospital (RIH) and associate professor of psychiatry and neurology at Alpert Medical School, Brown University. He encouraged the audience to look beyond CBT and investigate new therapeutic approaches including motivational interviewing.
Audience discussion of patient cases followed the presentations.
Janelle Wagner, PhD, research associate professor at the Medical University of South Carolina and W. Curt LaFrance, MD coordinated the session.
Wagner J, LaFrance C, Cognitive and Behavioral Treatments-Effective Psychobehavioral Treatments in Adults and Children with Epilepsy: Closing the Practice and Research Gaps, 2016, American Epilepsy Society Annual Meeting, www.aesnet.org.
1. LaFrance, Jr WC, et al. Epilepsy in Women – the Scientific Basis for Clinical Management. Int Rev Neurobiol. 2008;83:347-383.
2. Guilfoyle S, et. al. Development and Preliminary Implementation of a Psychosocial Service into Standard Medical Care for Pediatric Epilepsy. Clin Pract Pediatr Psych. 2013;1(3):276-288.