ALS Diagnosis Takes 2-Times Longer with General Neurologists vs Specialists

It may take 2-times as long to receive a diagnosis of amyotrophic lateral sclerosis (ALS) from a general neurology clinic compared with a specialist, according to research published in Amyotrophic Lateral Sclerosis and Frontotemporal Dementia. Considering that people with ALS live an average of 2 to 5 years after the appearance of symptoms, the findings have major implications for increasing survival and improving quality of life for patients. The researchers, who were supported by the ALS Association (Arlington, VA), provide a clinical diagnosis and referral guide called thinkALS available at als.org/thinkals with the aim of helping to reduce diagnostic delay.

The study was conducted by the Time to Diagnosis working group, comprising 4 ALS specialists, 7 pharmaceutical industry experts, and 7 people living with ALS. Medicare claims data from 2011 to 2021 for 3926 enrollees diagnosed with ALS were analyzed to determine the timeline to diagnosis.

• For general, nonspecialist neurologists, it took an average of 16.7 months (median, 9 months) from initial consult to receive a diagnosis of ALS.
• For specialists, the average time from initial consult to diagnosis was 9.6 months (median, 4.5 months).

Additionally, researchers determined that billing for spine and neurosurgical evaluation and management services increased from 0.6% before the emergence of ALS symptoms to 1.6% in the year leading up to a diagnosis of ALS. This finding suggests that patients may be impacted by redundant and costly misdiagnoses and unnecessary testing when seeking an ALS diagnosis.

The thinkALS tool contains sets of clinical features that are indicative of ALS as well as clinical features that are indicative of conditions that mimic ALS. The tool comprises a flowchart that advises clinicians when to refer patients to a multidisciplinary ALS center.

"Diagnosing ALS is complex because there is no definitive diagnostic test and symptoms may mimic other neurological conditions, especially in the earlier stages," said Study Author Suma Babu, MBBS, MPH from the Sean M. Healey and AMG Center for ALS. "We hope that the thinkALS instrument will empower clinicians to think of ALS early and refer patients to multidisciplinary ALS centers urgently.”