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The Amyotrophic Lateral Sclerosis (ALS) functional rating scale – revised (ALSFRS-R) is the most widely used tool for the clinical monitoring in ALS patients. Despite his usefulness as a multidimensional scale, the combined score derived from different domains is not linearly related to symptoms severity. The Rasch-Built Overall ALS Disability Scale (ROADS) has recently been developed to overcome some of these limitations.  Objectives:  To validate the Italian version of the ROADS scale and assess the reliability of its administration to patients versus their respective caregivers and the correlation to the corresponding ALSFRS-R.  Methods:  In the Turin ALS Center, the ROADS Scale questionnaire was administered together with ALSFRS-R to 55 ALS patients and their caregivers during regular follow-up assessments. Correlation analysis was performed using Spearman’s rho, Bland-Altman difference plots, Cronbach’s alpha coefficient and Intraclass correlation coefficient (ICC), one-way random effects were used for proper comparison.  Results:  Their correlation coefficient between patients and caregivers ROADS was found to be very high (ICC 0.95,  p  &lt; 0.001). Stratifying for age, sex, site of onset, type of caregiver, disease duration, and progression rate, ICC values that did not change significantly among the considered categories. We also found a high correlation between ROADS and ALSFRS-R total score (patients’ correlation coefficient: 0.88).  Conclusions:  The Italian version of the ROADS scale is a valid and reliable tool to monitor disease burden, showing a high level of agreement between the responses given by patients and caregivers.

amyotrophic lateral sclerosis and frontotemporal degeneration

Validation of the Italian version of the Rasch-Built Overall Amyotrophic Lateral Sclerosis Disability Scale (ROADS) administered to patients and their caregivers