Patient-reported outcomes in epilepsy: a case study exploring their usage and impact.

Area of Science:

• Neurology
• Clinical Research
• Health Services Research

Background:

• Epilepsy management relies on effective patient assessment.
• Patient-Reported Outcome (PRO) measures offer insights into patient experience and quality of life.
• Understanding specialist perspectives on PRO use is crucial for optimizing epilepsy care.

Purpose of the Study:

• To gather insights from epilepsy specialists regarding the utilization of Patient-Reported Outcome (PRO) measures.
• To explore the impact of PROs on the management of epilepsy and healthcare resource utilization.

Main Methods:

• A structured survey was administered to heads of two epilepsy referral units at a tertiary care hospital.
• Data collection involved paper-based questionnaires and face-to-face interviews.
• Various quality of life and symptom assessment scales were utilized, including QOLIE-31, GAD-7, and SF-36.

Main Results:

• Specialists reached a consensus on the favorable impact of PROs on patient and disease management, and treatment success measurement.
• PROs were considered as important as treatment efficacy and tolerability.
• Key barriers to PRO implementation included lack of time, personnel, and economic resources.
• PROs have the potential to reduce visits and treatments while increasing patient-centered care and specialized services.

Conclusions:

• A uniform perception exists regarding the role of PROs in optimizing epilepsy care, despite variations in current data collection practices.
• Standardized PRO use is considered beneficial, with increased human resources identified as a priority for successful implementation.