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Validation of the Italian version of self-administered ALSFRS-R scale

Umberto Manera1 ALS Centre, Department of Neuroscience “Rita Levi Montalcini”, University of Torino, Turin, Italy andCorrespondence[email protected]

https://orcid.org/0000-0002-9995-8133

Sara Cabras1 ALS Centre, Department of Neuroscience “Rita Levi Montalcini”, University of Torino, Turin, Italy and

Margherita Daviddi1 ALS Centre, Department of Neuroscience “Rita Levi Montalcini”, University of Torino, Turin, Italy and

Rosario Vasta1 ALS Centre, Department of Neuroscience “Rita Levi Montalcini”, University of Torino, Turin, Italy and

https://orcid.org/0000-0002-0393-4736

Maria Claudia Torrieri1 ALS Centre, Department of Neuroscience “Rita Levi Montalcini”, University of Torino, Turin, Italy and

Francesca Palumbo1 ALS Centre, Department of Neuroscience “Rita Levi Montalcini”, University of Torino, Turin, Italy and

Alessandro Bombaci1 ALS Centre, Department of Neuroscience “Rita Levi Montalcini”, University of Torino, Turin, Italy and

https://orcid.org/0000-0002-3961-6780

Maurizio Grassano1 ALS Centre, Department of Neuroscience “Rita Levi Montalcini”, University of Torino, Turin, Italy and

Luca Solero1 ALS Centre, Department of Neuroscience “Rita Levi Montalcini”, University of Torino, Turin, Italy and

Laura Peotta1 ALS Centre, Department of Neuroscience “Rita Levi Montalcini”, University of Torino, Turin, Italy and

Barbara Iazzolino1 ALS Centre, Department of Neuroscience “Rita Levi Montalcini”, University of Torino, Turin, Italy and

Antonio Canosa1 ALS Centre, Department of Neuroscience “Rita Levi Montalcini”, University of Torino, Turin, Italy and;2 SC Neurologia 1U, AOU Città della Salute e della Scienza of Torino, Turin, Italy

https://orcid.org/0000-0001-5876-4079

Andrea Calvo1 ALS Centre, Department of Neuroscience “Rita Levi Montalcini”, University of Torino, Turin, Italy and;2 SC Neurologia 1U, AOU Città della Salute e della Scienza of Torino, Turin, Italy

https://orcid.org/0000-0002-5122-7243

Adriano Chiò1 ALS Centre, Department of Neuroscience “Rita Levi Montalcini”, University of Torino, Turin, Italy and;2 SC Neurologia 1U, AOU Città della Salute e della Scienza of Torino, Turin, Italy

https://orcid.org/0000-0001-9579-5341

Cristina Moglia1 ALS Centre, Department of Neuroscience “Rita Levi Montalcini”, University of Torino, Turin, Italy and;2 SC Neurologia 1U, AOU Città della Salute e della Scienza of Torino, Turin, Italy

https://orcid.org/0000-0001-7377-7222

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Abstract

Objectives

To validate and assess the reliability of the Italian version of self-administered ALSFRS-R, considering patients’ clinical and cognitive features and caregiver’s help. Methods: During the COVID-19 pandemic, by analyzing the results of 70 paired self-administered vs standard telephone-administered ALSFRS-R, we calculated overall score, single item scores, ALSFRS-R domain scores, King’s and MiToS stage inter-rater agreement and reliability using different validated methods. We created the Italian version of self-administered ALSFRS-R following ENCALS recommendation. Results: Correlation between the two scales was 0.94 and no systematic directional bias was found. The intraclass correlation coefficient (ICC) was very high (>0.90) for the vast majority of the considered classification criteria, especially King’s total score (0.96) and MiToS score (0.94). A higher ICC was found when the patients answered the questionnaire with the caregiver’s help (0.95). Conclusions: Online self-administered ALSFRS-R scale is a valid tool to stratify ALS patients into clinical stages and to implement telemedicine monitoring.

Keywords:

Acknowledgements

Our special thanks to Elisa Pesce for the Italian translation of the self-administered ALSFRS-R version. The Italian version is available in Supplementary material.

Disclosure statement

Dr. Manera, Dr. Cabras, Dr. Daviddi, Dr. Vasta, Dr. Torrieri, Dr. Palumbo, Dr. Bombaci, Dr. Grassano, Dr. Solero, Dr. Peotta, Dr. Iazzolino, Dr. Canosa, and Dr. Moglia report no conflicts of interest. Prof. Calvo has received a research grant from Cytokinetics. Prof. Chiò serves on scientific advisory boards for Mitsubishi Tanabe, Roche, Biogen, and Cytokinetics. The sponsor organizations had no role in data collections and analysis and did not participate in writing and approving the manuscript. The information reported in the manuscript has never been reported elsewhere.

Data availability statement

Data will be available upon request by interested researchers.

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Validation of the Italian version of self-administered ALSFRS-R scale

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Validation of the Italian version of self-administered ALSFRS-R scale

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