INTRODUCTION: The mean diagnostic delay of amyotrophic lateral sclerosis (ALS) is greater than one year. Its causes are multiple, related to the affection, the patient, or medical practices. METHODS: An investigation was carried out in 77 consecutive patients, to describe their medical course since the date of the first symptoms until the diagnosis. Interrogation of the private practitioners potentially implied in the diagnostic procedure enabled an evaluation of the degree and origin of their knowledge of the disease. RESULTS: In the majority of patients, the first consultation was conducted by a general practitioner. Referral to a neurologist occurred on average 7 months after this consultation. A first-intention electrophysiological examination was prescribed in one-third of patients. Practitioners were unknowledgeable about certain clinical signs. Their knowledge on the disease came primarily from medical school training and for two-thirds, their satisfaction concerning their degree of training was low. CONCLUSION: This observational study shows that medical practices contribute to delayed diagnosis of ALS, particularly delayed referral to a neurologist. To enable earlier diagnosis, general practitioners should be informed of the usefulness of early referral for multidisciplinary care of patients.
INTRODUCTION: The mean diagnostic delay of amyotrophic lateral sclerosis (ALS) is greater than one year. Its causes are multiple, related to the affection, the patient, or medical practices. METHODS: An investigation was carried out in 77 consecutive patients, to describe their medical course since the date of the first symptoms until the diagnosis. Interrogation of the private practitioners potentially implied in the diagnostic procedure enabled an evaluation of the degree and origin of their knowledge of the disease. RESULTS: In the majority of patients, the first consultation was conducted by a general practitioner. Referral to a neurologist occurred on average 7 months after this consultation. A first-intention electrophysiological examination was prescribed in one-third of patients. Practitioners were unknowledgeable about certain clinical signs. Their knowledge on the disease came primarily from medical school training and for two-thirds, their satisfaction concerning their degree of training was low. CONCLUSION: This observational study shows that medical practices contribute to delayed diagnosis of ALS, particularly delayed referral to a neurologist. To enable earlier diagnosis, general practitioners should be informed of the usefulness of early referral for multidisciplinary care of patients.