Rating the severity of ALS by caregivers over the telephone using the ALSFRS-R

We tested the hypothesis that the ALSFRS-R can be accurately administered exclusively to the spouse/caregiver over the telephone (phone) in 31 patients with clinically possible, probable, or definite ALS (El Escorial criteria) by comparing the phone response to the consensus assessment during a clinic visit using a standardized script. We also compared the responses of the spouse/caregiver, during a private assessment, to the consensus assessment. Both the phone and private assessments were highly correlated with the consensus assessment, even considering that the evaluations were performed by multiple phone assessors and, in three instances, multiple home assessors. These results suggest the possibility of using this approach to conduct research in ALS.