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Abstract
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, SARAhome , for measuring ataxia severity easily and independently at home. Based on feasibility of self-application, we selected 5 SARA items (gait, stance, speech, nose-finger test, fast alternating hand movements) for SARAhome (range, 0-28). We compared SARAhome 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 SARAhome , we directly compared the self-applied SARAhome 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. SARAhome extracted from the EUROSCA baseline data was highly correlated with conventional SARA (r= 0.9854, P< 0.0001). In the prospective validation study, the SARAhome 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 SARAhome scores ranged from 1 to 5.5. The SARAhome and the conventional SARA are highly correlated. Application at home is feasible. There was a considerable degree of intraindividual variability of the SARAhome scores. © 2021 The Authors. Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.
Highlights
Proper assessment of the severity of ataxia is essential for clinical care, but even more for observational studies and interventional trials
The SARAhome score extracted from the EUROSCA baseline data was highly correlated with the SARA score (r = 0.985, P < 0.0001; Fig. S2a)
We have developed and validated a video-based assessment of ataxia, SARAhome, that is derived from the original SARA and can be self-applied by patients at home
Summary
Proper assessment of the severity of ataxia is essential for clinical care, but even more for observational studies and interventional trials. This is done using clinical scales, such as the Scale for the Assessment and Rating of Ataxia (SARA), an extensively validated scale that is applied by trained examiners in a clinical or research environment.[1] Such scales cannot be used to study the severity of ataxia at home or to assess day-to-day and within-day fluctuations, which are reported by almost all ataxia patients. The urgent need for instruments that allow remote assessment of ataxia is underlined by the current COVID-19 pandemic that impeded patient care and led to interruption of observational and interventional trials in ataxia. We here present a video-based assessment, SARAhome, that can be done independently of the presence of an examiner applied by ataxia patients themselves at home
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