Unique quality of life priorities for people with epilepsy and comorbid functional seizures

Epileptic seizures (ES) and functional seizures (FS) commonly coexist. People with both conditions (ES + FS) report different contributing factors to quality of life (QOL) compared to people with ES only. However, a distinct core outcome set (COS) for measuring QOL among people with ES + FS does not exist.

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

Of 291 adults with epilepsy, 269 had ES and 22 had ES + FS. People with ES + FS assigned critical importance to more QOL outcomes across a wider range of domains, particularly in functional, psychiatric, and healthcare utilization areas. 38 QOL outcomes were rated as critically important for potential inclusion in a COS for people with ES + FS. There were differences in QOL priorities between groups, with people with ES + FS assigning higher importance to having questions on "having thoughts of suicide" and items related to high-acuity, frequent, and prolonged encounters with the healthcare system.

Measuring QOL in people with ES + FS, who assigned greater importance to suicidal ideation and healthcare utilization items, requires an overlapping but distinct COS when compared to people with ES.