The Financial Burden of Amyotrophic Lateral Sclerosis Diagnosis: Estimating Costs of Unnecessary Procedural Interventions and Exclusionary Testing

Abstract

Background: People living with amyotrophic lateral sclerosis (ALS) experience diagnostic delays, involving multiple visits to neurologists and non-neurologist specialists. During this process, patients may be misdiagnosed and undergo unnecessary procedures. Additionally, ALS diagnosis often requires a comprehensive and possibly costly workup. The objective of this study is to characterize the diagnostic trajectory of patients with ALS in the United States by (1) reporting the prevalence of unnecessary procedural interventions and (2) providing descriptive estimates of healthcare costs incurred from symptom onset to diagnosis.

Methods: We conducted a retrospective chart review of 143 patients referred to a US-based ALS Center and enrolled in the ALS/MND Natural History Consortium Study. For each patient, unnecessary procedural interventions and diagnostic assessments prior to diagnosis were recorded. Cost estimates were derived from the Medicare Procedure Price Lookup Tool, Medicare Claims Database, and hospital-specific price transparency documents.

Results: Of the 143 patients, 43 (30%) underwent unnecessary procedures prior to diagnosis. Spinal surgery (n = 16, 37%) and upper extremity nerve decompression (n = 13, 30%) were most common. The average cost of an unnecessary procedure was US$12,165. The average diagnostic workup cost was US$17,078. For the subset of patients who underwent unnecessary intervention, the average total cost—including procedural intervention and diagnostic testing—rose to US$27,976.

Conclusion: ALS diagnosis is often preceded by procedural interventions and extensive diagnostic testing, which may contribute to increased healthcare costs. Mitigating these costs can improve diagnostic pathways, lower healthcare spending, and enhance patient outcomes.