Real-Life Disability-Adjusted Life Years (DALY) Capture the Disability of Epilepsy Better from an Individual's Perspective.

Abstract

For 1.3 billion population in India, there are only scarce reports on disability of epilepsy using disability-adjusted life year (DALY) as a measure. Our objective was to estimate DALY using real-life data over a period of time for a cohort of people with epilepsy (PWE) admitted to an Epilepsy Monitoring Unit (EMU) of a tertiary care epilepsy center. : We ascertained survival status as on December 31, 2016 of all eligible admissions to the EMU between 01/01/2005 and 12/31/2015. We examined the medical records of randomly selected 200 of the 1970 survivors and all the expired PWE (n = 40) for clinical characteristics. The cumulative real-life DALY (cr-DALY) for individual was calculated as the sum of the years lost to disability (YLD) and the years of life lost (YLL). Annual population-based DALY (p-DALY) was estimated from the cr-DALY, total patient-years of follow-up, and regional population prevalence. The cr-DALY per PWE was 17.63 (generalized seizures only). The cr-DALY increased by 23.7% when all seizure types were considered (23.12). PWE with epilepsy onset <10 years of age, focal epilepsy (particularly, extratemporal lobe epilepsy), and premature death had significantly higher cr-DALY. Those who underwent surgery for epilepsy or achieved remission had significantly lower cr-DALY. The computed p-DALY was 583/1,00,000 population (generalized epilepsy contributed 165/1,00,000 population; focal epilepsy contributed 418/1,00,000 population). Our study had identified, for the first time, several determinants that reduced DALY significantly. Real-life DALY, rather than prevalence-based DALY, captures the cumulative disability of affected individuals. Epilepsy leads to loss of 23 years of disability-adjusted life span for the affected person. This can be extrapolated to substantial economic benefits.