Self-completed patient-reported outcome measures in adults with epilepsy: A review

Epilepsy affects 65 million people worldwide, and is a World Health Organization priority disease as highlighted in their 2022-2031 Intersectoral Global Action Plan (IGAP) on Epilepsy and other Neurological Disorders. IGAP's objectives include improving epilepsy treatment and care. Patient-reported outcomes measures (PROMs) may assist with this. PROMs are self-report instruments that assess the lived experience of disease, for example, quality of life, mood, and treatment adverse effects. Regulatory agencies recommend including PROMs in clinical trials, and incorporating PROMs into routine clinical practice may improve patient outcomes. We conducted a narrative review of PubMed and health regulatory agencies' guidelines to identify PROMs used in clinical epilepsy research and practice. We identified 390 unique PROMs used in epilepsy settings. We summarize the practical considerations for PROMs selection, including the various psychometric properties that can be used to measure how "good" a PROM is; the role for generic, neurology-specific, and epilepsy-specific PROMs; and ways to optimize the collection of PROMs in clinical settings. This review discusses the strengths and limitations of 22 PROMs, covering four domains (health-related quality of life, disability and seizure severity, mood, and antiseizure medication adverse effects), that are commonly used in clinical epilepsy research and practice. This article may serve as a useful reference for researchers and clinicians when selecting PROMs for use in clinical epilepsy trials and routine clinical practice, and complements the recently published report from the International Consortium for Health Outcomes Measurement that recommends five specific PROMs assessing quality of life, depression, anxiety, cognition, and sleep. The judicious selection and application of PROMs may lead to better understanding of patient experiences, inform clinical decision-making, and ultimately improve outcomes. PLAIN LANGUAGE SUMMARY: Patient-reported outcome measures (PROMs) are questionnaires completed by patients, assisting with communication of their lived experience of disease with clinicians. PROMs cover topics such as quality of life, disability, mood, and treatment side effects. PROMs may improve patient satisfaction and communication with healthcare providers, detect hitherto undisclosed issues, and can be used to monitor treatment response. This current review summarizes the strengths and limitations of 22 PROMs that are commonly used in clinical epilepsy research and practice.