Development of SARA^home, a New Video‐Based Tool for the Assessment of Ataxia at Home

Abstract

Background: Clinical scales such as the Scale for the Assessment and Rating of Ataxia (SARA) cannot be used to study ataxia at home or to assess daily fluctuations. The objective of the current study was to develop a video-based instrument, SAR-A home , for measuring ataxia severity easily and independently at home. Methods: Based on feasibility of self-application, we selected 5 SARA items (gait, stance, speech, nosefinger test, fast alternating hand movements) for SAR-A home (range, 0-28). We compared SARA home items with total SARA scores in 526 patients with spinocerebellar ataxia types 1, 2, 3, and 6 from the EUROSCA natural history study. To prospectively validate the SARA home , we directly compared the selfapplied SARA home and the conventional SARA in 50 ataxia patients. To demonstrate feasibility of independent home recordings in a pilot study, 12 ataxia patients were instructed to obtain a video each morning and evening over a period of 14 days. All videos were rated offline by a trained rater. Results: SARA home extracted from the EUROSCA baseline data was highly correlated with conventional SARA (r = 0.9854, P < 0.0001). In the prospective validation study, the SARA home was highly correlated with the conventional SARA (r = 0.9254, P < 0.0001). Five of 12 participants of the pilot study obtained a complete set of 28 evaluable videos. Seven participants obtained 13-27 videos. The intraindividual differences between the lowest and highest SARA home scores ranged from 1 to 5.5. Conclusion: The SARA home and the conventional SARA are highly correlated. Application at home is feasible. There was a considerable degree of intraindividual variability of the SARA home scores.

Gait Variability in Spinocerebellar Ataxia Assessed Using Wearable Inertial Sensors

“…Future studies should investigate correlations between patient-reported quality of life and gait measures discriminating gait characteristics from SCA from HC. Fourth, given a considerable degree of intraindividual variability in SARA score at home, 56 future studies should explore the potential of gait variability measures to capture daily fluctuations in a free-living condition. Finally, we ranked mobility measures characterizing mobility impairments in SCA and prodromal SCA based on AUC.…”

Determining the Validity of Conducting Rating Scales in Friedreich Ataxia through Video

“…Recently, a video‐based assessment of the SARA has been developed, 18 indicating the need for measures that are able to be performed remotely. The SARA home enables items of the SARA to be performed independently by participants at home.…”

The Clinical Value of Patient Home Videos in Movement Disorders

“…Telemedicine evaluations of common scales used in movement disorders have been found to be non-inferior to in-person evaluations [6]. One recent prospective study was able to validate a modified Scale for the Assessment and Rating of Ataxia (SARA) self-recorded by ataxia patients in their own homes [9]. They found that the concordance rate between SARA scores performed in person highly correlated with SARA scores obtained on home videos and evaluated by a trained examiner (r = 0.985, p < 0.0001).…”