University of Washington

Department of Rehabilitation Medicine

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A comparison of epilepsy self-management needs: provider and patient perspectives


Johnson EK, Fraser RT, Miller JW, Temkin N, Barber J, Caylor L, Ciechanowski P, Chaytor N



Publication Info:

Epilepsy Behav, 25(2):150-155


A consistent and serious empirical issue in the epilepsy self-management literature involves dropout and attrition in intervention studies. One explanation for this issue revolves around "top-down" intervention designs (i.e., interventions generated by epilepsy clinicians and researchers) and the potential for disparity with patient interests, capabilities, and perceived needs. The purpose of this study was to extend the work of Fraser et al. (2011) [19] by comparing perceptions regarding self-management problems, topics, and program design, between two subgroups of adult patients with epilepsy (n=165) and epilepsy clinicians (n=20). Results indicate differences in problem severity ratings, program emphasis (i.e., goal-setting, coping, education), and program leadership between clinicians and each patient subgroup to varying degrees. These findings highlight some of the differences in opinion between patients and clinicians and emphasize the need for patient-involved planning with regard to self-management programs. Implications and explanations are offered as points for consideration in self-management program development.

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