From bed-side to web-side, Advanced-Telemedicine platform for Spinal Muscular Atrophy

We aimed to assess feasibility, accuracy, satisfaction of an advanced-telemedicine (A-TM) platform designed for remote physical evaluation, especially focused on lung auscultation, in spinal muscular atrophy (SMA) patients. Children affected by type 1 and 2 SMA, typically present generalized weakness, scoliosis, chest deformities the leading cause of progressive respiratory insufficiency and recurrent hospitalization. Covid-19 stimulated efforts to adopt innovative digital health solutions especially when caring for people living with disabilities. Because of chest asymmetry and scoliosis, SMA patients are not always the ideal candidates for telemedicine tools that have proved to be useful in the general population. 23 children affected by SMA (15 type 1 and 8 type 2) with different degree of scoliosis and chest asymmetry. Prospective study: We localized optimal thoracic auscultatory landmarks with traditional stethoscope and lung ultrasound for each child. Carers were trained to record complete lung auscultation independently and share data with our physicians via A-TM platform. After the first remote exam, carers videorecorded their experience (satisfaction). Our physicians blindly rated the audio files shared via A-TM which were compared to traditional auscultation findings for each child. to assess. Overall feasibility and accuracy of carers-performed remote physical evaluation. Our study showed that remotely performed lung auscultation was possible in all type 1 and 2 SMA children but adaptations to find optimal landmarks were needed in cases with asymmetrical or rotated chest and trunk. A-TM tools may simplify access to care, reduce logistic/economic burden for families, improve communication, safety and disease management while limiting infection exposure.