Patient voices in acute symptomatic seizures: A qualitative approach to outcome assessment

Acute symptomatic seizures (ASyS) are a common complication in critically ill patients and a risk factor for late-onset epilepsy, yet little is known about how patients experience recovery after discharge. Assessing patient-reported outcomes that individuals identify as meaningful is essential to developing a patient-centered approach aimed at improving quality of life in people with ASyS. Understanding patient perspectives is critical for improving outcomes in this unique population.

To identify domains of recovery that matter most to adults with ASyS during their first post-discharge outpatient visit.

We conducted a qualitative descriptive study of 50 adults seen in the Post-Acute Symptomatic Seizure (PASS) Clinic at the University of North Carolina. Open-ended questions were asked as part of routine clinical care and documented verbatim. Thematic analysis was performed to identify major domains of patient concerns, challenges, and priorities.

Six major themes emerged: (1) memory and communication difficulties, (2) concerns about antiseizure medications, (3) complexity of care in patients with comorbidities, (4) functional and psychosocial quality-of-life impacts, (5) fear of recurrence and safety concerns, and (6) reproductive and family-planning concerns. Patients frequently reported disrupted confidence, uncertainty around medication purpose and duration, functional limitations-particularly driving-and significant anxiety about future seizures. While fear of recurrence was prominent, anticipatory anxiety of seizures was not systematically assessed, representing an important area for future investigation.

Patients recovering from ASyS experience cognitive, emotional, functional, and informational challenges. These findings highlight the need for ASyS-specific outcome measures and structured, patient-centered educational interventions to improve recovery and quality of life in this population.

Question: What are the most important recovery domains for adults with acute symptomatic seizures (ASyS) during their first post-discharge outpatient visit?

In this qualitative study of 50 adults seen in a PASS clinic, six major themes emerged: memory and communication difficulties, antiseizure medication concerns, complexity of care with comorbidities, functional and psychosocial quality-of-life impacts, fear of recurrence, and reproductive or family-planning concerns. Meaning: Patients recovering from ASyS face multidimensional cognitive, emotional, functional, and informational challenges that underscore the urgent need for ASyS-specific outcome measures and structured, patient-centered educational interventions.