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Patient attitudes about treatments for intractable epilepsy
Kari Swarztrauber1, Sandra Dewar, Jerome Engel
1Department of Neurology, Portland VAMC, Portland, OR 97207, USA. swarztra@ohsu.edu
Objective:
The goals of this study were to understand patient attitudes about the treatment of medically intractable epilepsy and to document potential barriers limiting patient access to the surgical treatment of epilepsy, highlighting the attitudes of adolescents and minorities.
Methods:
Focus groups of adults with intractable epilepsy (n=10), adolescents with intractable epilepsy (n=4), parents of adolescents with intractable epilepsy (n=4), and African-Americans with intractable epilepsy (n=6) were conducted at UCLA, Los Angeles, California.
Results:
Patients with intractable epilepsy communicated frustration with their continued disability despite trials of new medications. Their perceptions of the risks of the surgical treatment of epilepsy were exaggerated. Patients felt that their health care providers did not provide adequate information about epilepsy and portrayed epilepsy surgery negatively.
Conclusions:
This study illuminated several factors that could change patient attitudes and help improve patient access to the surgical treatment of epilepsy, especially among minorities and adolescents.