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Abstract Details

Factors Contributing to Diagnostic Delay in Amyotrophic Lateral Sclerosis Among Primary Care Providers
Neuromuscular and Clinical Neurophysiology (EMG)
Neuromuscular and Clinical Neurophysiology (EMG) Posters (7:00 AM-5:00 PM)
043
To identify factors that contribute to diagnostic delay in amyotrophic lateral sclerosis (ALS) among primary care providers (PCPs).
PCPs generally do not refer patients with suspected ALS early enough to specialists, with an average ALS diagnostic delay of ~1 year.
A 35-question email-based survey largely derived from published ALS diagnostic delay factors was developed during 2 refining “phases” involving ALS experts and those identified as neuromuscular medicine specialists in the Â鶹´«Ã½Ó³»­ membership. Phase 3 was deployed to the intended target audience of PCPs in the Cleveland Clinic Health System. 
Of the PCPs responding (77/691, 11%) only: (a) 12% were confident with recognizing signs and symptoms of ALS, (b) 16% were confident with distinguishing between a neurologic cause of dysfunction from other possible causes, and (c) 18% were confident with distinguishing between upper and lower motor neuron signs. If presented with a weak patient without a specific diagnosis (seen by 73% in the previous year), PCPs: (a) most frequently ordered electrodiagnostic testing, brain MRI, and serum creatine kinase level, (b) referred to a specialist 85% of time, most frequently a general neurologist (81%) or neuromuscular specialist (42%). PCPs identified top reasons for later ALS diagnosis as: (a) patient’s delay in seeking initial medical help, (b) uncertainty of diagnosis, (c) waiting time and proximity of a neurology/neuromuscular provider, and (d) not knowing what tests to order. The most desired strategies to shorten diagnostic delay involved: (a) educating PCPs (89%) and other non-neurologist “gatekeeper” providers (62%), (b) improving access to specialist neurology care (62%), and (c) developing a reliable diagnostic test for ALS (58%).
Factors that increase ALS diagnostic delay among PCPs largely comprise gaps in clinical knowledge and skills required to detect key symptoms and signs, and suboptimal referral access to a neurology/neuromuscular provider. 
Authors/Disclosures
John A. Morren, MD, FÂ鶹´«Ã½Ó³»­ (Cleveland Clinic)
PRESENTER 		Dr. Morren has received publishing royalties from a publication relating to health care.
Carol Rheaume (Â鶹´«Ã½Ó³»­) Ms. Rheaume has nothing to disclose.
Erik P. Pioro, MD, DPhil, FÂ鶹´«Ã½Ó³»­ (University of British Columbia) Dr. Pioro has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Avanir Pharmaceutical, Inc.. Dr. Pioro has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Amylyx Pharmaceuticals. Dr. Pioro has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Argenx. Dr. Pioro has received personal compensation in the range of $500-$4,999 for serving as a Consultant for MT Pharma America, Inc.. Dr. Pioro has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for NeuroTherapia, Inc.. Dr. Pioro has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for MT Pharma America, Inc..