ALS diagnosis takes longer for Black patients than white patients: Study
Limb-onset, pneumonia, twitching occurs more often among non-white patients
Black people with amyotrophic lateral sclerosis (ALS) tend to have a different disease course than white patients; they are diagnosed at a younger age, more commonly have muscle weakness that starts in the hands, and have pneumonia more frequently, a study from the Centers for Disease Control and Prevention (CDC) finds.
Black patients also see a significantly longer diagnostic delay, indicating barriers persist in accessing care. Understanding better how ALS manifests in non-white people may help address those disparities and ensure all patients receive an ALS diagnosis and treatment as soon as possible, said the study’s researchers.
“Increased recruitment of non-white ALS patients and better characterization of symptom onset between races might aid clinicians in diagnosing ALS sooner, leading to earlier therapeutic interventions,” they wrote in the study, “Racial Disparities in the Diagnosis and Prognosis of ALS Patients in the United States,” in the Journal of Racial and Ethnic Health Disparities.
While ALS can affect people of all races and ethnicities, it’s more common among white people in the U.S. This can contribute to a perception of ALS as a “white disease” and make it harder for people of other races to be diagnosed and receive prompt ALS treatment.
Here, researchers at the CDC examined data from 4,242 patients with ALS in the U.S. who enrolled in the National ALS Registry between 2010 and 2022 to obtain more data about how ALS may differ between races, which could help educate doctors and improve access to care among certain minority populations. Among the patients analyzed, 96.1% self-identified as white, 1.7% as Black, and 2.2% were classified as “other races.”
Differences among Black, white ALS patients
Black patients differed from white patients in several clinical characteristics of the disease. For example, a significantly greater proportion of Black patients were diagnosed before age 50 (26.7%) relative to white patients (12.9%). People of other races, 62% of whom self-identified as Asian, were also significantly younger at their diagnosis relative to white patients.
Across all groups, most patients (70%) had limb-onset ALS, meaning their first symptoms of muscle weakness affected the limbs. But hand and arm onset was significantly more common in Black patients, who less frequently had bulbar onset, where the first symptoms affect the muscles in the head and throat, or global onset, where the initial symptoms are generalized across the body.
Black ALS patients also more commonly have pneumonia than white people, while twitching was slightly more common in people of other races than white patients.
Reaching an ALS diagnosis
Because many ALS symptoms are nonspecific and no single test can diagnose the disease, getting an accurate ALS diagnosis often takes several months. There are several barriers to care that disproportionately affect people of ethnic and racial minorities, however.
Consistently, researchers found that, despite having a younger average age at diagnosis, Black patients had a significantly longer diagnostic delay than white patients, 24 months versus 16 months.
People of other races waited a similar time as white patients from their first symptoms to a definite ALS diagnosis, overall, but the delays were much longer in both non-white groups when the initial symptoms were speech problems, 18 months for Black patients and 15 months for those of other races, compared with six months for white patients.
Regarding nonpharmacological interventions, the researchers found that both white patients and people of other races started using noninvasive breathing equipment before their official diagnosis (one month and 11 months earlier, respectively), while Black patients started using such equipment six months after the diagnosis, on average. And Black patients underwent a procedure where a hole is made through the neck into the trachea to help with breathing, called a tracheostomy, sooner after a diagnosis relative to white patients, and were also referred to hospice sooner than the other patient groups.
The study had several limitations, most notably that the Black patient population was likely underrepresented. While recent epidemiological studies estimate that 6.5% of all ALS patients are Black, only 1.7% of participants in this registry self-identified as Black. This may be due to reduced access to technology and the internet to complete surveys, lack of awareness of the registry, and greater concerns about data security and exposure of public health identification.
The researchers called for increased awareness of ALS signs and symptoms to improve access to care for minority populations.
“Educating physicians about the disparities in access to care for minority ALS populations and the timing of nonpharmacological interventions might help lengthen survival for all ALS patients,” they wrote.
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