Delays in Diagnosing Amyotrophic Lateral Sclerosis (P03.174)

Objective: Determine the factors contributing to delays in ALS diagnosis. Background The recent explosion in science and the number of ongoing ALS clinical trials highlight the importance of early ALS diagnosis. Despite increased knowledge and awareness about ALS, the time from ALS symptom onset to diagnosis remains to be approximately 12 months and unchanged in the past twenty years. Design/Methods: This is a retrospective study of a cohort of people who were seen at Massachusetts General Hospital ALS clinic. Patients were identified through ALS billing codes and data collection was done though detailed charts review. Results: The number of ALS subjects analyzed was 93 on the day this abstract was submitted. Median time from symptom onset to suspected and confirmed ALS diagnosis was 10 and 12 months, respectively. The diagnosis was suspected by a general neurologist and an ALS specialist in 40% and 30% of cases, respectively, and was confirmed by an ALS specialist in 83% of cases. Patients saw an average of 3-4 different specialties before the ALS diagnosis was made. Common specialties visited: neurology, ENT, orthopedics, and Emergency rooms. When these patients were seen by these specialties, the diagnosis was 9unknown9 in 50% of the visits and the most common alternative diagnoses were neuropathy, spinal cord problem, and stroke. The most common symptoms were muscle weakness 91%, cramps 63%, and fasciculations 62%. The most common signs were weakness 98%, increased reflexes 95%, fasciculations 70%, muscle atrophy 67%, gait changes 50%, and tongue abnormalities 42%. Conclusions: It takes approximately 10 months from symptom onset to suspect the diagnosis of ALS and refer patients to ALS clinics. Confirming the diagnosis is quick (2 months) once patients are seen by an ALS specialist. Accelerated ALS diagnosis can be accomplished by early referral to ALS Clinics and targeted ALS awareness to frequently referring specialists. Supported by: AAN and MDA Fellowship Grants. Disclosure: Dr. Atassi has received personal compensation for activitie with Gerson Lehrman Group and Monitor. Dr. Lee has nothing to disclose. Dr. Chang has nothing to disclose. Dr. Macklin has nothing to disclose. Dr. Cudkowicz has received personal compensation for activities with Synapse, Trophos, and Acclerson as a data safety monitoring board chair or an advisory board member.