Résumé en anglais

Purpose: The International League Against Epilepsy (ILAE) Commission on Healthcare Policy in consultation with the World Health Organization (WHO) examined the applicability and usefulness of various measures for monitoring epilepsy healthcare services and systems across countries. The goal is to provide planners and policymakers with tools to analyze the impact of healthcare services and systems and evaluate efforts to improve performance. Methods: Commission members conducted a systematic literature review and consulted with experts to assess the nature, strengths, and limitations of the treatment gap and resource availability measures that are currently used to assess the adequacy of epilepsy care. We also conducted a pilot study to determine the feasibility and applicability of using new measures to assess epilepsy care developed by the WHO including Disability-Adjusted Life Years (DALYs), responsiveness, and financial fairness. Results: The existing measures that are frequently used to assess the adequacy of epilepsy care focus on structural or process factors whose relationship to outcomes are indirect and may vary across regions. The WHO measures are conceptually superior because of their breadth and connection to articulated and agreed upon outcomes for health systems. However, the WHO measures require data that are not readily available in developing countries and most developed countries as well. Conclusion: The epilepsy field should consider adopting the WHO measures in country assessments of epilepsy burden and healthcare performance whenever data permit. Efforts should be made to develop the data elements to estimate the measures.