ALS survival may be cut short by living in disadvantaged communities

(Press-News.org) Living in a disadvantaged community may decrease the length of time a person can survive with amyotrophic lateral sclerosis, or ALS, by over 30%, a Michigan Medicine-led study suggests.

ALS is a progressive, incurable condition that causes muscle wasting and loss of muscle control.

While most people survive with ALS around two to four years, some people can live significantly longer.

In the study of more than 1,000 patients with ALS seen between 2012 and mid-2024, people from the most disadvantaged neighborhoods had up to a 37% shorter survival time compared to those from the most resourced areas.

U-M researchers used the Area Deprivation Index, a tool created at University of Wisconsin, which measures neighborhood disadvantage using factors such as income, education, employment and housing.

The results are published in Neurology, the medical journal of the American Academy of Neurology.

“Our results show a significant link between adverse social determinants of health and shorter survival in patients with ALS,” said senior author Stephen Goutman, M.D., M.S., Harriet Hiller Research Professor, director of the Pranger ALS Clinic and associate director of the ALS Center of Excellence at University of Michigan.

“For years, we have defined the ALS ‘exposome’ as how environmental exposures over a lifetime affect a person’s ALS risk and survival. The lived environment — in other words, the social exposome — is a key contributor to the overall exposome and is important to consider. Moreover, a deeper understanding of how socioeconomic factors contribute to ALS survival is important for making ALS a more livable disease and reducing the impact of health disparities.”

The cost of caring for someone with ALS is tremendous: People with ALS can pay up to $250,000 out-of-pocket each year, according to the ALS Association.

The study design didn’t offer insight into the cause of the survival differences, but researchers note that more resourced patients often can afford additional care to limit burnout for family caregivers.

“A person’s social determinants of health may uniquely impact ALS due to the incredible costs of care, so it is important that we consider social factors and highlight the urgent need for interventions to reduce health disparities in ALS care,” said first author Dae Gyu Jang, Ph.D., postdoctoral fellow in the U-M Health Department of Neurology. 

Similar studies have shown that living in resource-deprived areas is associated with a higher burden of Alzheimer’s Disease and related dementias.

Researchers say living in a disadvantaged community is also linked to measures of inflammation and accelerated biological aging, which may affect the trajectory of ALS.

“This is a critical area that requires further attention to help improve the lives of people with ALS,” Goutman said.

“This work could also highlight necessary changes in the systems of care for persons living with ALS to ease the burden of care.”

Additional authors: Adam Patterson, MADS, Meredith Pedde, Ph.D., and Eva L. Feldman, M.D., Ph.D., all of University of Michigan, W. Ryan Powell, PhD, M.A., and Amy J Kind, M.D., Ph.D., both of University of Wisconsin School of Medicine and Public Health.

Funding/disclosures: This research was supported by the National Institute of Environmental Health Science (K23ES027221, R01ES030049), the National Institute of Neurological Disorders and Stroke (R01NS127188), and the National Institute on Aging (R01AG070883), all of the National Institutes of Health.

This content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Additionally, this work was supported by the Centers for Disease Control and Prevention of the U.S. Department of Health and Human Services (R01TS000327). The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by CDC/HHS, or the U.S. Government.

The Standford Morris ALS research fund also supported this research.

Paper cited: “Impact of the adverse social exposome on survival in individuals with amyotrophic lateral sclerosis,” Neurology. DOI: 10.1212/WNL.0000000000213362

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