Objective:

A distinct core outcome set (COS) for measuring quality of life (QOL) among people with epilepsy syndrome (ES) and non-epileptic spells (NES) has not yet been established, and further studies are needed to understand this patient population’s priorities in QOL measurement.

Background:

ES and NES commonly coexist. People who live with both conditions (ES + NES) report different contributing factors to quality of life (QOL) compared to people with ES only.

Design/Methods:

We analyzed cross-sectional data collected from an existing Delphi consensus study that defined a QOL COS for adults with epilepsy with or without comorbid NES. Participants assigned importance rankings via a 9-point Likert scale to 248 QOL outcomes spanning 26 domains. A potential COS inclusion list was identified via established consensus thresholds. Group differences for QOL priorities between those with and without comorbid NES were evaluated by Wilcoxon rank-sum tests.

Results:

Of 291 adults with self-reported epilepsy diagnosed by a physician, 269 had ES and 22 had ES + NES. People with ES + NES assigned critical importance to a larger number of QOL outcomes across a wider range of domains, particularly in functional, psychiatric, and healthcare utilization areas. A total of 38 QOL outcomes were rated as critically important for potential inclusion in a COS for people with ES + NES. There were differences in QOL priorities between groups, with people with ES + NES assigning higher importance to having questions on suicidal ideation and healthcare utilization items related to high-acuity, frequent, and prolonged encounters with the healthcare system.

Conclusions:

Measuring QOL in people with ES + NES requires an overlapping but distinct COS when compared to people with ES. People with ES + NES assigned greater importance to suicidality and healthcare utilization items, supporting the need for a dedicated COS for this patient population.