Transitions in Perspective: The “Global Burden of Disease” project and Neurology

Perspective is everything.

If you were around and interested in “Global Neurology” prior to 1994, then you felt mightily alone. The metric for assessing the burden or impact of a disease or health condition was essentially a body count. This rather primitive approach failed to capture at all the burden of diseases that devastate without necessarily causing rapid death. Think severe cerebral palsy. Untreated, primary progressive multiple sclerosis. Dementia. Treatment resistant epilepsy. You get the idea. So the development of the Disability Adjusted Life Year (DALY) and efforts to quantify this through the Global Burden of Disease work were transformative for global neurology.1, 2 Neuropsychiatric disorders rose out of oblivion to become recognized as one of the top causes of the global burden.3 Let’s call this “Transition in Perspective: Phase 1”

But still, something was not quite right. The “DALY”, developed to assign disability severity, had values assigned for specific conditions through the rather dubious approach of asking ‘experts’ in the field. And really. What do we know? Not to mention, as might have been predicted, this approach was open to invested investigators trying to game the system to assure that the condition they studied was allotted as high a DALY as possible. The next major advance in the GBD work involved surveying tens of thousands of people worldwide, describing to them various disabilities and letting them assign the disability severity. What happens when you do this? Again, neurologic conditions leap to the forefront. Let’s call this “Transition in Perspective: Phase 2”.

At the same time that new GBD findings were being impacted by DALY values determined via a global survey rather than expert opinion, the Lifting the Burden: Global Campaign to Reduce the Burden of Headache Worldwide managed to persuade the powers that be in the World Health Organization and the GBD leadership to include headache in the GBD estimates. WOW! In “Transition in Perspective: Phase 3” Headache, which was not previously considered a condition worthy of study, ranked number 3 for women and number 7 globally in terms of GBD.4

These first 3 shifts in perspective have been critical to changing the misperception that neurological disorders as a esoterica not relevant to public health and clinical practice in resource limited settings. The final challenge for thos interested in using GBD data to inform health services planning has been the GBD methodological approach that “attributes” a condition to its root cause. For example, if an adult has epilepsy as a result of a road traffic accident, this “burden” is attributed to accidental trauma. This approach leads to big problems if one is trying to use GBD burden data for planning health service needs. The trauma physician is not the healthcare provider who will be managing this patient’s chronic seizure disorder. So this brings us to Phase 4. This month in Lancet Neurology, the GBD Collaborators Group has published a systematic analysis of neurological burden from the perspective of health delivery.5 One of the interesting findings is that due to the population growth and aging, over the past 25 years neurologic burden has been on the rise.

 

  1. Murray CJ. Quantifying the burden of disease: the technical basis for disability-adjusted life years. Bull World Health Organ 1994;72:429-445.
  2. Murray CJ, Lopez AD. Quantifying disability: data, methods and results. Bull World Health Organ 1994;72:481-494.
  3. Murray CJ, Lopez AD. Global mortality, disability, and the contribution of risk factors: Global Burden of Disease Study. Lancet 1997;349:1436-1442.
  4. Steiner TJ, Birbeck GL, Jensen R, Katsarava Z, Martelletti P, Stovner LJ. The Global Campaign, World Health Organization and Lifting The Burden: collaboration in action. J Headache Pain 2011;12:273-274.
  5. Group GBDNDC. Global, regional, and national burden of neurological disorders during 1990-2015: a systematic analysis for the Global Burden of Disease Study 2015. Lancet Neurol 2017;16:877-897.

 

Gretchen L. Birbeck, MD, MPH

Gretchen L. Birbeck, MD, MPH

Gretchen Birbeck is a neurologist who divides her time between the US and Africa. Her US academic home is the University of Rochester where she is the Rykenboer Professor of Neurology and Research Director for the Strong Epilepsy Center with adjunct appointments in the Center for Human Experimental Therapeutics and the Department of Public Health. Her additional skills in epidemiology, health services research, and tropical medicine are brought to bear during the 6-months annually she spends in Africa where she serves as Director for the Chikankata Epilepsy Care Team in rural Mazabuka, Zambia, an Honorary Lecturer at the University of Zambia and a consultant for the Paediatric Research Ward at Queen Elizabeth Central Hospital in Blantyre, Malawi. Gretchen’s research programs are aimed at identifying opportunities to prevent or ameliorate the medical and social morbidities of common neurologic conditions in low-income, tropical settings with the ultimate goal of developing successful interventions feasible for scale up and broad implementation. She has been recognized as an Ambassador for Epilepsy by the International League against Epilepsy, a Global Health Research Ambassador by the US Paul Rogers Society, a National Outreach Scholar by the WK Kellogg Foundation and a Leader in Medicine by the American Medical Students Association.

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