Current treatment pathways in ALS: a European perspective.

This article presents the findings relating to the European subgroup of 91 patients in an international survey of the current diagnosis and treatment of patients with amyotrophic lateral sclerosis (ALS). The mean time between first symptoms and first consultation with a physician was 4.9 months, and mean delay in seeing a neurologist was then about 6 months, yielding a mean time from symptom onset to confirmation of diagnosis of 17.8 months. The time to confirmation of diagnosis was slightly longer for patients with symptoms of limb onset (18.5 months) than for those with bulbar onset (17.5 months). Cases with symptoms of upper-limb onset were diagnosed more rapidly (15.5 months) than those with symptoms of lower-limb onset (21.8 months). The diagnosis was confirmed in 51% of cases within 15 months of symptom onset, and a further 23% were diagnosed within 15-24 months; 55% of cases were confirmed within 4 months of consultation with a neurologist, and a further 14% within 4-6 months. The first physician seen was the general practitioner in 68% of cases. When the neurologist was the first physician seen (7% in Germany, 13% in Italy, 0% in Spain), diagnosis was achieved within 14 months in 67% of cases. EMG was performed in almost all patients. MRI and CT were widely used, possibly causing delays. Announcement of the diagnosis was made immediately to 85% of patients and within 1 month to a further 9%. Riluzole was prescribed for 76% of patients overall.