Clinical outcome assessment in patients with epilepsy: The value of health-related quality of life measurements

This narrative review provides an overview of the current knowledge on health-related quality of life (HRQOL), a relevant clinical outcome in patients with epilepsy. It shows that the most important factor determining HRQOL in this patient group is seizure frequency. In particular, seizure-freedom is associated with better HRQOL scores. Many other factors may impact perceived HRQOL aspects, but their interrelation is complex and requires further research. Novel analytical approaches, such as hierarchical cluster and symptom network analyses might shed further light on this, and may result in recommendations for interventions on the most ‘central’ factors influencing different aspects of HRQOL in patients with epilepsy. Next, an overview of the HRQOL tools and analytical methods currently used in epilepsy care, with a focus on clinical trials, is provided. The QOLIE-31 is the most frequently applied and best validated tool. Several other questionnaires focusing on specific aspects of HRQOL (e.g., mood, social impact) are less frequently used. We show some pitfalls that should be taken into account when designing study protocols including HRQOL endpoints. This includes standardized statistical analysis approaches and predefined reporting methods for HRQOL in epilepsy populations. It has been shown in other patient groups that the lack of such standardisation negatively impacts the quality and comparability of results. We conclude with a number of recommendations for future research.