ReviewPsychosocial treatment programs in epilepsy: A review
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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