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Telehealth approach for amyotrophic lateral sclerosis patients: the experience during COVID‐19 pandemic
Author(s) -
De Marchi Fabiola,
Sarnelli Maria Francesca,
Serioli Marcella,
De Marchi Ilaria,
Zani Ermes,
Bottone Nicola,
Ambrosini Serena,
Garone Raffaella,
Cantello Roberto,
Mazzini Letizia
Publication year - 2021
Publication title -
acta neurologica scandinavica
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.967
H-Index - 95
eISSN - 1600-0404
pISSN - 0001-6314
DOI - 10.1111/ane.13373
Subject(s) - telemedicine , telehealth , medicine , pandemic , medical prescription , multidisciplinary approach , quality of life (healthcare) , amyotrophic lateral sclerosis , covid-19 , health care , physical therapy , disease , nursing , infectious disease (medical specialty) , social science , sociology , economics , economic growth
Background and objective Specialized 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. Methods 19 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).” Results All 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. Discussion Our 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.