BACKGROUND: Amyotrophic lateral sclerosis (ALS) is a rare and progressive neurodegenerative disease that is difficult to diagnose. Diagnosis of ALS involves referrals from various specialties and time to diagnosis is influenced by the referring physician/specialty area. Timely diagnosis is critical for identifying and initiating effective treatment, however, delays in diagnosing ALS are common, creating a greater need to understand the importance of referral patterns in ALS diagnosis. There are currently 3 US Food and Drug Administration (FDA)-approved treatments for patients with ALS: riluzole, edaravone (Radicava® IV [intravenous] and Radicava ORS® oral suspension; Mitsubishi Tanabe Pharma America [MTPA]), and tofersen (for patients with a superoxide dismutase 1 mutation).
OBJECTIVES: To describe referral patterns for ALS diagnosis, including top specialties that diagnose patients with ALS that were enrolled in a real-world, US-based administrative claims database.
RESULTS: Patients with ALS continuously enrolled in Optum’s de-identified Clinformatics® Data Mart (CDM) from January 2007 to December 2023 were included and grouped based on ALS treatment pattern (ie, untreated, riluzole-only, MTPA edaravone±riluzole). Index date was the ALS diagnosis date. Patients with ALS with a ≥2-year history prior to index ALS diagnosis (n=8120) enrolled in Optum’s CDM were a mean (SD) age of 68.5 (12.9) years, 54.8% male, and 65.5% were covered by Medicare (vs commercial insurance). Pre-index disease progression milestones and HCRU were measured. Overall, the top 3 specialty areas that diagnosed patients with ALS were psychiatry and neurology (37.6%), internal medicine (15.5%), and general acute care hospital (9.5%). Overall, the top 3 specialty areas that diagnosed patients referred to them were psychiatry and neurology (50.8%), internal medicine (17.8%), and family medicine (15.9%).
CONCLUSION: These real-world data may help clinicians and payers better understand the referral patterns of patients with ALS, which may aid in reducing delays in diagnosis and treatment.
Sponsorship: This study was sponsored by Mitsubishi Tanabe Pharma America, Inc.