Unveiling the Hidden Impact: Measuring Epilepsy's Disability with Real-Life DALY

Bajaj Jitin¹, Chandra P Sarat²,  
¹ Department of Neurosurgery, NSCB Medical College, Jabalpur, India
² Department of Neurosurgery, All India Institute of Medical Sciences, Delhi, India

Correspondence Address:
Chandra P Sarat
Room 706, 6^th Floor, CN Centre, All India Institute of Medical Sciences, New Delhi
India

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Epilepsy casts a significant shadow and impacts the quality of life and overall well-being of individuals and their caregivers.[1],[2] Yet, the true extent of its impact on quality of life and overall well-being often remains hidden. Refractory epilepsy poses even greater challenges and magnifies the burden for individuals living with this condition.[3] To fully comprehend the weight of epilepsy's impact and capture the disability experienced by those affected the Disability Adjusted Life Years (DALY) is often used. By combining years of life lost due to premature mortality and years lived with disability, DALY offers a comprehensive understanding of the true toll.

In the study entitled “Real-life Disability Adjusted Life Years (DALY) Captures The Disability Of Epilepsy Better From An Individual's Perspective,” authors set out to estimate DALY using real-life data from a cohort of people with epilepsy (PWE) admitted to an Epilepsy Monitoring Unit (EMU) over a prolonged follow-up. By examining the medical records of 200 survivors and 40 deceased PWE, the researchers gathered clinical characteristics and calculated each individual's cumulative Real-life DALY (cr-DALY). Furthermore, they estimated the Annual Population-based DALY (p-DALY) by considering the cr-DALY, total patient-years of follow-up, and regional population prevalence. The study's findings were revealing. They demonstrated that the cr-DALY per PWE stood at 17.63 when considering generalized seizures alone, a staggering figure in itself. However, when all seizure types were taken into account, the cr-DALY soared to 23.12. Factors such as early onset of epilepsy, focal epilepsy—especially Extra Temporal lobe epilepsy—and premature death were significantly associated with higher cr-DALY scores. Conversely, those who underwent epilepsy surgery or achieved remission showed significantly lower cr-DALY values, offering glimmers of hope amidst the darkness. Critically, the study underscored the limitations of prevalence-based DALY estimates and highlighted the need to embrace real-life DALY assessments based on individual data. These assessments provide a more accurate representation of the true disability experienced by people living with epilepsy. By considering unique circumstances such as age of onset, seizure type, and treatment outcomes, real-life DALY offers profound insights into the intricacies of epilepsy's impact.

The implications of this study reverberate far beyond the realm of scientific research. They have the potential to reshape healthcare policies and drive informed decision-making that prioritizes the needs of those living with epilepsy. Acknowledging the staggering burden imposed by epilepsy and recognizing the specific factors that contribute to disability can pave the way for targeted interventions and the allocation of resources where they are most needed.

Efforts must be concentrated on reducing the treatment gap, ensuring equitable access to effective treatments, promoting epilepsy surgery for those with refractory cases, and striving for remission. By actively implementing strategies that address these areas, we can significantly reduce DALY and improve the overall well-being of individuals with epilepsy. Furthermore, the social stigma surrounding epilepsy, which compounds the challenges faced by those affected, can also be diminished through the provision of adequate care, support, and epilepsy surgery.[4]

It is crucial to acknowledge the limitations of this study also. The retrospective-prospective study design and a proportion of subjects lost to follow-up are factors that warrant caution. However, the meticulous data collection, extensive follow-up period, and extrapolation to population-based DALY lend credibility and generalizability to the findings.

This study serves as a call to prioritize real-life DALY estimates when assessing the disability experienced by individuals with epilepsy. By embracing individual-level data and accounting for specific determinants, we can unveil the hidden impact of epilepsy and foster a more compassionate and informed approach to care. The findings emphasize the urgent need for targeted interventions that alleviate the burden of epilepsy and improve the quality of life for those affected. Through concerted efforts, we can unlock substantial economic and societal benefits while ensuring better health outcomes for people living with epilepsy. Let us work together to bring epilepsy's hidden disability out of the shadows and into the light of understanding, empathy, and transformative change.

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