Authors :
Presenting Author: Sandra Dewar, PhD, RN, FAES, FAAN – VCU Health
Jennifer Haynes, MD – Neurology – VCU; Ken Ono, DO – Neurology – VCU Health; Paul Koch, MD – Neurosurgery – VCU Health; Christine Baca, MD, MSHS, FAES, FAAN – Neurology – VCU Health
Rationale: Adults with medicine resistant epilepsies (MRE) often have uniquely challenging health care needs that require understanding individual treatment goals within the context of multifaceted medical decision-making. Given the complexity of diagnostic work-up dedicated time is needed to evaluate patient and family expectations and their understanding of epilepsy care that can include a wide range of therapeutic options. To compliment routine inpatient and outpatient neurology and neurosurgery encounters, we developed a complex epilepsy care nurse clinic (CECNC) at our tertiary level-4 epilepsy center which operates within a safety-net health system. We describe the feasibility of establishing a novel clinic with the following goals: 1) better understanding clinical and social factors required for optimal medical decision-making, and 2) optimizing communication that integrates interdisciplinary care.
Methods: Eligible adults with MRE were referred from the epilepsy clinics, after epilepsy monitoring unit (EMU) admission, multi-disciplinary epilepsy surgery conference, or following neurosurgical evaluation. The definition of complex MRE includes patients (1) eligible for surgery, but with decisional hesitancy, high clinical risk factors, and/or psychosocial challenges, (2) with mild to moderate developmental delay who rely on family caregivers for treatment decisions. All visits were conducted via telemedicine, with 60-minute initial visits and 30-minute repeat visits. Age, gender, race, epilepsy syndrome, seizure types, reason for referral and next steps were recorded.
Results: Since CECNC launch in February 2023, 43 encounters were recorded for 25 unique patients including 16 (64%) females and 15 (60%) African American. Visits explored disease burden, perceptions of illness severity, coping strategies, and expectations for long-term disease care and potential outcome. Visits were focused and individualized, with bi-directional benefit (team and patient/family). Primary visit purpose for each encounter was coded into one of four categories: (1) patient decision-making about surgery (56%), (2) clarifying surgical risk factors where history is unclear (12%), (3) facilitation of coping strategies for chronic disease (7%), supportive oversight to enhance continuity and engagement (25%). Patient visits were attended 100%. Patients and families comprising this vulnerable sub-population spontaneously expressed gratitude for the opportunity to discuss personal impact of illness with respect to treatment goals.
Conclusions: The CECNC is a feasible, innovative care delivery model. The clinic serves to integrate comprehensive care through intentional understanding of patient and family goals and treatment expectations. Improved, shared understanding of disease severity facilitates interdisciplinary teamwork. Tracking timely progression through a multiphase treatment program, that may include surgery is important. Metrics to reflect outcome measures need to be established.
Funding: None