Epilepsy education in gliomas: engaging patients and caregivers to improve care

Abstract

Background: Tumor-related epilepsy (TRE) is the most common cause of hospitalizations in patients with malignant gliomas leading to increased distress and decreased quality of life (QOL) for patients and caregivers.

Purpose: We sought to determine the feasibility of incorporating a structured TRE-specific education intervention into clinical practice while assessing effect on distress and TRE knowledge.

Methods: We prospectively enrolled glioma patients and their caregivers on an IRB-approved study. Subjects underwent a pre-test to assess baseline knowledge regarding seizure management. A neuro-oncology provider guided subjects through a presentation focused on safety and home management of seizures. Seizure-related distress was measured before and after the educational intervention using a distress thermometer. A post-test was completed. At 2 and 6 months, distress was re-assessed and post-tests were repeated. Subject satisfaction was assessed.

Results: Fifty subjects (23 patients, 27 caregivers) were enrolled. Median age was 59. Fifty-seven percent of patients had TRE. Median time to completion was 21.5 min. Median baseline distress scores were 2/10 for patients and 5/10 for caregivers. Distress scores decreased by a mean of 1.5 points and TRE knowledge increased by 2 points for all subjects between the initial and 2-month visit. Ninety-eight percent of subjects strongly agreed that the education was helpful and informative. Caregivers reported more distress despite better baseline seizure knowledge than patients.

Conclusion: Structured TRE education is feasible in patients with gliomas and their caregivers and may be effective in reducing distress. Further prospective studies are warranted to assess effects on hospitalizations, cost, and QOL.

Keywords: Caregiver; Epilepsy; Glioma; Neuro-oncology; Patient education.