Identifying the Reasons Behind Gaps in ALS Diagnosis Between Specialists and General Neurologists: Kuldip Dave, PhD

WATCH TIME: 4 minutes

"ALS is difficult to diagnose—there’s no one test or procedure; it’s a clinical process that often involves ruling out other diseases."

Research has shown that there is significant variability in how amyotrophic lateral sclerosis (ALS) presents and progresses over time. In the United States, average time from first symptom to ALS diagnosis confirmation ranges from 11.5 to 15 months. Additionally, a patient with ALS typically will see 3-4 consultations with various health professional before seeing an ALS specialist for a more final, accurate diagnosis.

A recently published study led by those at The ALS Association aimed to identify where delays in ALS diagnosis occur using Medicare claims database health care utilization patterns. During 2011-2021, the time observed, 78,520 Medicare beneficiaries were diagnosed with ALS. Overall, the mean timelines between first neurologist ambulatory visit and time to ALS diagnosis was 16.5 (median, 11.0) months; however, the time for ALS/neuromuscular providers was 9.6 (±12.6) months vs 16.7 (±17.5) months for non-neuromuscular neurologists.

In a recent interview with NeurologyLive^®, lead author Kuldip Dave, PhD, addressed the diagnostic delays in patients with ALS, emphasizing the role of limited disease exposure among non-neuromuscular specialists and systemic challenges in healthcare. Dave, senior vice president of research at The ALS Association, stressed the difficulties with diagnosing the condition based on a lack of approved, definitive testing. He also spoke about how non-specialists often order extensive tests or wait for symptom progression, inadvertently causing delays. Above all, he drew attention to the cracks in the healthcare system, such as long wait times for specialist appointments and multiple diagnostic procedures.

REFERENCE
1. Dave KD, Oskarsson B, Yersak J, et al. Contributions of neurologists to diagnostic timelines of ALS and thinkALS as an early referral instrument for clinicians. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration. Published online December 10, 2024. doi:10.1080/21678421.2024.2432034