New Patient Resource Binder to Educate and Improve Self-Management of Epilepsy
Abstract number :
2.109
Submission category :
15. Practice Resources
Year :
2025
Submission ID :
509
Source :
www.aesnet.org
Presentation date :
12/7/2025 12:00:00 AM
Published date :
Authors :
Jennifer Haynes, MD – Virginia Commonwealth University
Presenting Author: Margaret Mahoney, MSN, RN, CNRN – VCU Health
Christine Baca, MD, MSHS – Virginia Commonwealth University
Sandra Dewar, PhD, FAES, FAAN – VCU Health
Rationale: Evidence from educational interventions supports that patient education not only improves self-management but enhances patient
outcomes and improves quality of life. Many patients with uncontrolled epilepsy reaching our clinic are attending a level 4 epilepsy center for the first time. The goal of our patient education initiative was to: (1) create an educational resource for new clinic patients at an academic level 4 NAEC epilepsy center that serves a safety-net population to promote self-management, hope
and trust and enhance a patient’s quality of life and (2) to test the impact of patient education on our patients' knowledge of epilepsy and confidence in our clinic. Thus, we developed a resource binder that serves to welcome new patients, introduces our team, and educates on what to expect at a specialized epilepsy center. We report on the launch of a pilot project.
Methods: Key stakeholders were engaged to collate and prioritize by consensus approach key education topics for new patient. The purple “playbook” binder is organized with 10 tabbed informative sections. For this pilot project patients who are to receive
the binder are identified each week in advance and confirmed by the epileptologist prior to distribution. Inclusion criteria include: (1) new to clinic, (2) new diagnosis, or (3) epileptologist recommendation for established patient who would benefit from additional targeted education and self-management. The protocol for dissemination of the purple binder is: the epilepsy nurse
navigator meets with the patient and family and walks them through the binder, tab by tab, answering questions and discussing what self-management is and how it can improve one’s overall quality of life. An evaluation of the success of the binder includes a pre- (at time of binder acquisition) and post-test (at 6 months) questionnaire assessing improvement in patient epilepsy knowledge, confidence in our clinic and over quality of life.
Results: Conversations at time of implementation have allowed for frank discussion of each patient’s
particular needs and struggles and began a constructive dialogue from which to move forward.
Preliminary results highlighted divergence in how patients and caregivers assess the patient’s
mental and social well-being. In both samples, the patient provided a more positive
assessment of current mental and physical status, versus a less positive assessment from
primary caregiver. Both patients/caregivers indicated that the psychosocial sequelae related to his/her epilepsy is the most difficult barrier to improving overall quality of life.
Conclusions:
The results of the Patient Resource Binder on self-management and improved quality of life
among our patient population is ongoing. Preliminary data demonstrates the role of the
resource binder to promote frank conversations about epilepsy among patients, caregivers and
health care providers, and provides a practical and supportive resource for maximizing use the
VCU clinic.
Funding: The resource binders were funded by a grant from the VCU Medical Center Auxiliary.
Practice Resources