Cross‐Country Measures for Monitoring Epilepsy Care

Abstract

Summary: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 DisabilityAdjusted 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.

Epilepsy in the developing world

“…Disability-adjusted life years (DALYs) have been proposed as an indicator of the health effects of health care systems and are used to evaluate the impact of mortality and morbidity together [57]. Ding et al [58] carried out a study to demonstrate the application of DALYs as an aid in health outcome measures to evaluate the epilepsy disease burden.…”

Global disparities in the epilepsy treatment gap: a systematic review

“…[7][8][9][10][11][12] The epilepsy treatment gap, defined as the proportion of people with epilepsy who require treatment but do not receive it, has been proposed as a useful parameter to compare access to and quality of care for epilepsy patients across populations. 13,14 Prior anecdotal and descriptive estimates suggest a treatment gap of more than 80% in many low-income countries, 13,15 yet one recent systematic review and meta-analysis suggests that the treatment gap in developing countries is as low as 56%. 16 This intriguing discrepancy may be due to the methodological limitations of the prior systematic review, which had an excessively narrow search strategy, included only English-language articles, and used meta-analytic techniques to generate a population estimate of the treatment gap.…”

Challenges in the management of epilepsy in resource-poor countries

“…reviews to compare epilepsy burden and health-care performance across countries, in 2008 the ilae recommended using new wHo measures such as disability-adjusted life years, responsiveness of the health-care system to patient needs, and financial fairness. 5 However, the reliable data that are necessary to make even approximate estimates of the above wHo measures, such as epilepsy-related mortality and disability, and health-care system performance and its modes of financing, are seldom available from resource-poor countries.…”