Outcomes Research

S.E.E. Library

Information about epilepsy

Robert J. Mittan, Ph.D.

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			the S.E.E. program

	S.E.E. program Outcomes Research In 1978 the National Commission for the Control of Epilepsy and Its Consequences noted in its report that the greatest gap in epilepsy care was patient and family education and psychosocial treatment. The S.E.E. program was created in direct response to the National Institutes of Health’s funding initiative to create Centers of Excellence for the care of epilepsy, and in particular the funding of innovative treatment programs for education and psychosocial treatment of persons with epilepsy and their families. The S.E.E. program was created at UCLA and the Sepulveda VA Medical Center. S.E.E. is based upon a large grant awarded in 1980 to study the educational needs and psychosocial challenges of people with epilepsy and their families. The study lead to several surprising discoveries. One of the most important was that patients’ and families’ fears about death and brain damage from seizures was a far greater problem to their daily life adjustment than was social stigma (Mittan, 1986.) Further, about two-thirds of persons with epilepsy were found to be doing something physically hazardous in their own medical self-management (Mittan, 1981.) Non-compliance, already known to be a substantial problem in the treatment of epilepsy, was extensive. The challenge was to come up with a treatment program that was economical to administer, had long-term benefits for patients and families, and would survive past grant funding. Seizures & Epilepsy Education was the only program to emerge to meet those challenges from NIH’s original Centers of Excellence in the care of epilepsy. S.E.E. was a radical innovation, and a pioneer in Information Medicine. S.E.E. provided treatment for problems that had not been recognized before, such as patient and family fears. To be economical, the program was designed for large audiences and required only one person to present. The S.E.E. program has treated as many as 800 people at one time. This economical design was critical to surviving past NIH funding. However, the idea that meaningful psychosocial treatment could be accomplished in such a large group seemed unbelievable. While many programs tackled the problem of compliance over the years, the few successful ones were labor intensive and not practical. The notion that the S.E.E. program could create long-term compliance through a single weekend education program seemed unlikely at best. Yet this was a central goal of the program. It is very reasonable to wonder whether a large audience, “one shot” program like S.E.E. could possibly meet such demanding educational, psychosocial, and behavioral goals. The only way to find out was to put the program to the test through outcomes research, including studies conducted independently using good research designs. From the outset the Seizures & Epilepsy Education (S.E.E.) program has been subjected to continuous evaluation. Objective pre- and post-testing and subjective evaluations are conducted at every presentation. S.E.E. has been the subject of two independently conducted outcome studies. The first was by Helgeson, et al, (1990) which used a prospective, randomized control design to look at medical self-management, compliance, and psychosocial outcomes. That study looked at outcomes for adults with epilepsy. In the second decade of the S.E.E. program, parents of children with epilepsy and adolescents with epilepsy composed an increasing proportion of the audience. This raised the question whether S.E.E. would have long-term benefits for parents and adolescents. This question resulted in the recent study of S.E.E. long-term outcomes by Shore, et al. (2005). Attached to this page you will find summaries of all three outcome studies. While empirical results are essential for evaluating an intervention, seeing S.E.E. first hand provides the observer with a knowledge of how the objective results were achieved. That is when people become convinced of this innovative treatment technology, and its potential for other chronic health disorders as well. References Commission for the Control of Epilepsy and Its Consequences. (1978). Plan for Nationwide Action on Epilepsy, vols. 1-2, part 2, DHEW Publication No. NIH 78-276. Washington, D.C.: U.S. Government Printing Office. Mittan, R. (1986). Fear of seizures. In S. Whitman and B. Hermann (Eds.), Psychopathology in Epilepsy: Social Dimensions. (pp. 90-121). New York: Oxford University Press. Mittan, R. & Auerbach, D. (1981). Medical knowledge and psychosocial adjustment of adult male epileptics. Epilepsia 25(6), 781.