Objective:

To determine patient priorities during clinic visits for drug-resistant epilepsy (DRE)

Background:

Patients with DRE have complex care needs due to disabling illness and common comorbidities. While seizure control may be the dominant goal for clinicians, escalating treatment may not be an individual patient’s top priority. Understanding patients’ health preferences is essential to optimizing clinical outcomes. In this study, we surveyed patients to better understand specific priorities for upcoming epilepsy clinic visits.  

Design/Methods:

We recruited patients with epilepsy from our University’s health research e-platform. Patients completed survey questions regarding demographics, diagnosis, seizure control, and prior antiseizure medication (ASM) treatment, as well as communication with their physician and confidence in relaying preferences during their clinic visit (modeled after the validated questionnaire, Perceived Efficacy in Patient-Physician Interactions-PEPPI).

Results:

Of 46 patients with epilepsy, 19 reported answers consistent with DRE (i.e. 2+ ASMs and ongoing seizures in the last year). Patients with DRE were 63% female, 89% white, and 78% were ages 35-64. Over half of patients with DRE had failed 3+ drugs. When asked their top priority for their upcoming epilepsy clinic visit, 21% of patients with DRE chose improving thinking/memory, 16% chose improving anxiety/depression and 16% chose decreasing ASM due to side-effects; 16% chose increasing ASM. Only 21% (4/19) chose increasing or adjusting ASM amongst their top two priorities. Regarding communication and efficacy, 74% of patients felt very confident explaining their chief health concern to their provider.

Conclusions:

We found a range of top priorities for clinic visits for patients with DRE. Notably, most patients with DRE did not consider ASM escalation to be amongst their top priorities. While most surveyed felt confident in relaying top concerns, tools to elicit and communicate care priorities beyond seizure control could enhance individualized care for patients with DRE.