ALS patients treated by neurologists receive better care: Medicare study

Older, disadvantaged, and Black patients less likely to get specialist care

Steve Bryson, PhD avatar

by Steve Bryson, PhD |

Share this article:

Share article via email
A clinician holding a clipboard gestures while speaking to a patient sitting on an examining table.

People with amyotrophic lateral sclerosis (ALS) who are treated by a neurologist are more likely to receive evidence-based care endorsed by the American Academy of Neurology than those who see non-neurologist providers, according to an analysis of Medicare data.

Still, fewer than half of the ALS patients studied ever received care from a neurologist, with those who were older, Black, and socially disadvantaged being less likely to.

“The difference between the care received by ALS patients who were treated by a neurologist and those who did not see a neurologist was dramatic,” Brad Racette, MD, chair of neurology at the Barrow Neurological Institute in Arizona and study senior author, said in a press release. “This study highlights the importance of neurologist care for ALS patients and the need to overcome barriers and provide care that is more equitable for ALS patients.”

Details of the analysis were published in PLOS One in the study, “Adherence to practice parameters in Medicare beneficiaries with amyotrophic lateral sclerosis.”

Muscle weakness is the hallmark symptom of ALS, which generally begins as subtle changes that affecting one part of the body, but can rapidly spread to other muscles and become more severe. This can affect movement, swallowing, and breathing, with lung failure being the most common cause of death.

“Life expectancy in ALS is short,” Racette said. “Interventions that improve survival and quality of life are critical for the care of these patients.”

Recommended Reading
An illustration shows all different kinds of of oral medications.

Neurologists frustrated with ALS treatments now on market: Study

Care by neurologist linked to better ALS outcomes

In 2009, the American Academy of Neurology (AAN) published guidelines for ALS patient care, which include evidence-based interventions that seek to extend survival and improve quality of life. These included treatment with oral riluzole (sold as Rilutek, among others), early feeding tube placement, and noninvasive breathing support.

Although evidence-based practices and care by neurologists in specialized ALS centers are linked to better outcomes, implementing such guidelines can be slow and depend on provider education. Also, demographic, geographic, and social factors can limit access to a neurologist.

For these reasons, Racette and his colleagues investigated neurologist care, adherence to ALS clinical practice guidelines, and factors associated with guideline-based treatment. Using Medicare claims, they reviewed 8,575 ALS cases diagnosed in 2009 and followed up to 2014. The participants were primarily non-Hispanic white (86.7%), and about half were men (54.5%). Nearly all (91%) lived in a metropolitan/micropolitan area at their diagnosis and about one in six (15.5%) lived in a disadvantaged area.

Less than half (42.9%) the patients received care from a neurologist during the five-year follow-up. Older patients, particularly those above age 65, were significantly less likely to see a neurologist than younger ones.

After adjusting for age and other demographic factors, patients who were Black were also less likely to be treated by a neurologist than non-Hispanic white patients, as were beneficiaries who lived in disadvantaged areas. The patients who lived at least 50 miles from an ALS center saw a neurologist more often than those who lived closer.

Compared with the whole group, more ALS patients who saw a neurologist filled a riluzole prescription (15.3% vs. 30.2%), received a feeding tube (26.7% vs. 38.7%), and received noninvasive breathing support (19.2% vs. 38.4%).

After adjustments, ALS patients who saw a neurologist were more than seven times more likely to receive riluzole and almost three times more likely to receive a feeding tube than those who didn’t. Moreover, neurologist-treated patients were more than 10 times more likely to receive noninvasive breathing support.

Black beneficiaries were less likely to receive Rilutek or breathing support than non-Hispanic white beneficiaries, whether they saw a neurologist or not. Conversely, Black patients were more likely to receive feeding tubes when care was given exclusively by non-neurologists.

“Our study highlights the importance of receiving specialist care for ALS patients and provides evidence that may guide health policies and education efforts in the U.S.,” Racette said. “This is of critical importance as the aged population continues to increase; the treatment disparities presented here may continue to worsen without efforts to mitigate them, in particular for Black and disadvantaged beneficiaries.”