Self-reported factors contributing to delay in ALS diagnosis among primary care providers in a large Ohio-based US healthcare network

Abstract

Objective: This study's primary objective is to identify self-reported factors that contribute to diagnostic delay in ALS among Primary Care Providers (PCPs).

Methods: A de novo email-based survey was deployed to Ohio-based PCPs in the Cleveland Clinic Health System.

Results: Of the 77 PCP participants [including 30 Advance Practice Providers (APPs)] only: (a) 18% of physicians, and 3% of APPs were very confident or confident with recognizing signs and symptoms of ALS, (b) 13% of physicians, and 21% of APP s felt very confident or confident with distinguishing between a neurologic cause of dysfunction from other possible causes, and (c) 23% of physicians, and 11% of APPs felt very confident or confident with distinguishing between upper and lower motor neuron signs. If presented with a weak patient without a specific diagnosis, PCPs most frequently ordered electrodiagnostic testing, brain MRI, cervical or thoracic spine MRI, and serum creatine kinase. PCPs identified top reasons for delayed ALS diagnosis as: (a) patient's delay in seeking medical help, (b) diagnostic uncertainty (c) waiting time for neurology/neuromuscular medicine (NM) consultation. The most desired strategies to shorten diagnostic delay involved: (a) educating PCPs and other non-neurologist "gatekeeper" providers, (b) improving access to specialist neurology care, and (c) developing a reliable diagnostic test for ALS.

Discussion: Self-reported factors that increase ALS diagnostic delay among PCPs primarily comprise gaps in clinical knowledge and skills required to detect key symptoms and signs, and suboptimal referral access to a neurology/NM provider. These areas represent important opportunities for targeted improvement efforts.

Keywords: Amyotrophic lateral sclerosis; Continuing medical education; Diagnostic delay; Motor neuron disease; Neurology referral access; Primary care providers.