Impact of a Seizure Disorder Disease Management Program on Patient-Reported Quality of Life

Abstract

The objective of this study was to evaluate the impact of a comprehensive, multifaceted disease management program on self-reported quality of life (QOL) for adult patients with epilepsy. The study (1996-2000) employed a quasi-experimental research design in which primary care clinics in a southwestern integrated delivery system were assigned to either the intervention or comparison group. The impact evaluation involved a comparison of responses to a validated QOL survey before and after a disease management intervention for adult health plan members with epilepsy. The intervention consisted of both formal provider training and associated tools and reinforcements as well as direct-to-patient interventions, including a comprehensive education booklet, a seizure diary, a patient education class, and a resource list. Pre-post analysis utilizing paired t-tests was conducted to identify any pre-post differences in QOL for both the intervention and comparison group patients, as measured by the seven specific domains of the epilepsy QOL instrument (QOLIE-31). The intervention group patients showed statistically significant positive changes in two QOL domains: Seizure Worry (p < 0.001) and Emotional Well-being (p < 0.05). One other domain, Overall Quality of Life, showed improvement in the intervention group that approached statistical significance (p < 0.06). There were no statistically significant changes for the comparison group. A well-designed, comprehensive disease management program can improve patient empowerment and coordination of care between the patient and provider, which resulted in an improvement in quality of life, one of the most central patient outcomes in this difficult disease.