Neuromuscular disease. Evidence and analysis in clinical neurology

神经肌肉疾病。临床神经病学中的证据和分析

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Abstract

BACKGROUND: In Italy, due to the COVID-19 emergency, hospitals and health services were required to undergo rapid changes in organization and assistance delivery in order to control the epidemic outbreak. The confinement of the population and the outbreak impact on health care systems disrupted the routine care for non COVID-19 patients. Particular challenges have been faced for services working with neurodevelopmental disabilities and pediatric neurological disorders. We present the adaptation of our Child Neurology and Developmental Neuropsychology Service at the Developmental Neurology Unit, which is responsible for cognitive and behavioral assessment of children with neurodevelopmental disorders and neurological diseases, on an inpatient/outpatient basis, to the epidemic outbreak. In particular, we describe the introduction of telehealth in clinical practice and provide qualitative and quantitative data regarding the feasibility of the telemedicine protocol and the level of satisfaction experienced by families. OUTCOMES: Patients admitted on an inpatient basis are limited to non-deferrable cases; all patients do pre-admission screening to exclude COVID-19 infection. Child neurologists and psychologists have switched the out-patient visits to telemedicine sessions, despite they had little to no previous experience in telemedicine. Families' response to the proposal of video-sessions has been positive with 93 % of families accepting it, preparing appropriate devices and conditions to participate at home. Main barriers to tele-sessions access were socio-economic and linguistic disadvantage, together with familiar health issues. The Telemedicine Satisfaction Questionnaire revealed high level of agreementi between expected care and actual care received by patients and caregivers. CONCLUSIONS: The experience of our Service confirms the importance of an inclusive response to emergency with respect to people with disabilities, ensuring the quality and continuity of care in times of population quarantine. Our experience could be useful worldwide to evaluate the feasibility of the Italian emergency response applied to the assistance of children with neurodevelopmental disabilities.

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