Authors :
Presenting Author: David Ficker, MD – University of Cincinnati
Anne Paul, MA, MBA – UC Health
Denise Kelley, RN – UC Health
Scott Badzik, BS – UC Health
Kathy Badzik, RPh – Walgreen's
Charles McClinon, BA – UC Health
Adam Lickliter, BS – UC Health
Rationale:
Some of our most challenging epilepsy patients are evaluated in epilepsy monitoring units (EMU). Because EMU patients are admitted for several days awaiting seizures, this provides an opportune time for patient advocates to meet to review challenges in living with epilepsy.
Methods:
As part of our epilepsy learning health system, we have patient and family partners who serve on our quality improvement team. The idea for this project came from their direct input. Our epilepsy patient advocates (3 total) are patients with epilepsy who expressed interest in meeting with patients and to share their experiences on living with epilepsy. They have all been trained by our hospital’s volunteer service department. Our EMU nurse navigator screens weekly admissions and contacts the referring provider to determine if their patient might benefit from meeting with a patient with epilepsy (epilepsy patient advocate) while admitted to the EMU. If a patient is referred from an outside neurologist, the assigned EMU attending for that week reviews this chart to determine if a meeting with the epilepsy patient advocate is appropriate. Patients were surveyed after the advocate visit to determine benefit.
The following are the topics are those covered by the epilepsy patient advocate:
Challenges living with epilepsy/seizures
Resources for epilepsy patients and families (Epilepsy Foundation/Epilepsy Alliance)
Medication adherence and ways to help stay adherent
Epilepsy tracking (seizure diary, side effects)
Results:
Over a 31-week period, 52% of patients (121 of 231 admissions) were determined to be appropriate for the patient advocate to meet with. Developmental disability or suspected or confirmed nonepileptic events were the most common reasons for the advocate not seeing the EMU patient. The patent advocate met with 78% of eligible patients (95 total patients). The most common reason for the advocate not seeing the patient was early discharge from the EMU.
Patient survey results (41% response rate):
The information and resources reviewed with the patient advocate were helpful.
Strongly agree or Agree: 95%
I learned something new or was connected to a new resource after meeting with the patient.
Strongly agree or Agree: 95%
I feel more confident in managing my care after meeting with the patient advocate.
Strongly agree or Agree: 87%
Conclusions:
Peer counseling with patient advocate volunteers in the epilepsy monitoring unit is feasible and patients report significant benefit after meeting with them. Longer term follow-up on this benefit is underway.
Funding: none