Elsevier

Epilepsy & Behavior

Volume 16, Issue 3, November 2009, Pages 371-380
Epilepsy & Behavior

Review
Psychosocial treatment programs in epilepsy: A review

https://doi.org/10.1016/j.yebeh.2009.08.031Get rights and content

Abstract

Psychosocial problems are a major unmet treatment need in epilepsy. The purpose of this review was to describe published psychosocial treatment interventions in the English medical literature. Seventeen outcome studies for 15 treatments were found. Survival past proof of concept was a problem, with only four programs making it into current use. With important exceptions, treatments met with limited success. Several were successful with medical education, improving quality of life, social adjustment, and adjustment to seizures. A psychological intervention for seizure control for patients with refractory epilepsy was outstanding. Research problems included few control groups, a dependence on paper-and-pencil measures, limited variables, and only one study with serum determination for compliance. Low cost-effectiveness was a problem. Only one approach showed economic promise. Low participation by patients was an unexpected barrier. Psychosocial treatments should be targeted for development and needs to be integrated into the treatment flow of specialty clinics.

Introduction

“Possibly the least understood and most neglected aspects of epilepsy are the social, psychological, and behavioral problems that are so common… [These] can be more handicapping than the actual seizures, yet these problems often are unrecognized and little skilled assistance is available”. The Commission for the Control of Epilepsy and Its Consequences made this critical observation in 1975 [1]. Regrettably, this situation remains true today.

There is a broad and extensive literature documenting the psychiatric, behavioral, and psychosocial problems of epilepsy. However, research evaluating formal psychosocial interventions to ameliorate these problems is rare. The problems are well known. The solutions are not.

This article reviews the current state of published psychosocial and/or educational treatment programs for persons affected by epilepsy. It is hoped this discussion will provide a launching point for further innovation and inspire greater effort and funding for such important endeavors.

Section snippets

Procedure

Psychosocial treatment programs published since 1990 were investigated through the Epilepsy Foundation’s National Library database, a survey of epilepsy journals, and through additional citations found in discovered articles. Emphasis was placed on finding published patient education and psychosocial treatment programs that had formal outcome studies or that had been implemented beyond an initial pilot demonstration. Programs from epilepsy associations were not included because no English-based

What outcomes appear promising

The letters in square brackets refer to the name given to each specific study in the Program Name row of Table 1.

Intervention paradigm discussion

The theoretical frameworks of most interventions (if they are articulated) are still in their infancy. Only a few differences in treatment delivery methods exist among the studies reviewed. These conditions expose the nascent status of psychosocial treatment in epilepsy. Rather than a criticism, these situations should be appreciated as a significant beginning in an effort of great importance: the quest for psychosocial treatments to ensure the welfare and quality of life of people with

Issues in program development

The greatest problem among psychosocial treatment and educational programs was that only a handful of these interventions were ever put into general use. The usual pattern is an intervention was given a feasibility study and then was abandoned at that point. Development ends as a “demonstration of concept”. Only 4 of the 14 different interventions reviewed appear to be in ongoing use. Part of this may be explained by the fact that most demonstrations either were not successful or were only

Recommendations for the future

The development of psychosocial treatment programs in epilepsy has not kept pace with the development of medical treatments. With notable exceptions, the results of these outcome studies are modest. This is a very troubling state of affairs given the extent of treatment need identified within the community. Formal psychosocial treatment interventions need the same program and funding incentives that were provided with the National Institutes of Health initiatives for epilepsy treatment in the

Summary of specific programs

Please refer to Table 1 for a comparison of these studies. The letters in square brackets refer to the name given to each study found in the Program Name row of Table 1.

Conflict of interest statement

The author of this article is also the author of the Seizures & Epilepsy Education program. He had no role in SEE program outcome research cited herein aside from presenting the program for independent researchers.

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