• Fabiola De Marchi, Maria Francesca Sarnelli, Marcella Serioli, Ilaria De Marchi, Ermes Zani, Nicola Bottone, Serena Ambrosini, Raffaella Garone, Roberto Cantello, Letizia Mazzini, and CANPALS Study Group.
• Department of Neurology and ALS Centre, University of Piemonte Orientale, Maggiore della Carità Hospital, Novara, Italy.
• Acta Neurol. Scand. 2021 May 1; 143 (5): 489-496.

Background And ObjectiveSpecialized multidisciplinary ALS care has been shown to extend survival and improve patient's and caregiver's quality of life. During the COVID-19 pandemic, the management of patients suddenly changed and telemedicine has been proven to be as effective as outpatient care. We elaborate the experience with Telemedicine of a Tertiary ALS Center from an Italian geographical area with high infectious risk during the COVID-19 pandemic.Methods19 patients were evaluated in telemedicine by a multidisciplinary team including a neurologist (clinical evaluation, intercurrent events, and drug prescriptions); a dietician (diet and weight monitoring); a psychologist (psychological assessment and support); and a physiotherapist (physiotherapy treatment and device prescription). Telemedicine was performed using the online platform "IoMT Connected Care Platform (Ticuro Reply)."ResultsAll patients reported a positive perception of talking face to face with healthcare professionals and were satisfied with how the team understood their problems. During video televisits, there was a change in the patient's medication regimen in 11/19; 2/19 required pneumological evaluation and started NIV; and 9/16 patients required prescription of devices. The mean monthly decline of ALSFRS-R before televisit was 0.88 (SD 1.17) and during televisit of 0.49 (SD 0.75). Bodyweight and daily caloric content remain stable. Reduction in HADS scores and stability in ALSAQ-40 were observed.DiscussionOur study positively reproduced the multidisciplinary approach currently used with ALS patients, trying to stabilize the functional and metabolic status and improving the psychological one. Future directions include a personalized telemedicine program according to the patient's needs.© 2020 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.

25 keywords...

hide…