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

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.

A New Personalised Telehealth Model in Chronic Pediatric Diseases and Disability During The COVID-19 ERA (preprint)

Background: : Suspending ordinary care activities during the COVID-19 pandemic made it necessary to find alternative routes to comply with care recommendations not only for acute health needs but also for patients requiring follow-up and multidisciplinary visits. We present the ‘Contactless’ model, a comprehensive operational tool including a plurality of services delivered remotely, structured according to a complexity gradient, aimed to cover diagnostic procedures and monitor disease progression in chronic pediatric patients. Methods: : A multidisciplinary and multiprofessional project team was recruited, in collaboration with patients’ associations, to map a panel of available Evidence-Based solutions and address individual needs in full respect of the concept of personalized medicine. The solutions include a number of services from videoconsultations to more structure videotraining sessions. Results: : A modular framework made up of four three Macro-levels of complexity - Contactless Basic, Intermediate and Advanced - was displayed as an incremental set of services and operational planning establishing each phase, from factors influencing eligibility to the delivery of the most accurate and complex levels of care. Conclusion: : The multimodal, multidisciplinary ‘Contactless’ model allowed the inclusion of all Units of our Pediatric Department and families with children with disability or complex chronic conditions. The strengths of this project rely on its replicability outside of pediatrics and in the limited resources needed to practically impact patients, caregivers and professionals involved in the process of care. Its implementation in the future may contribute to reduce the duration of hospital admissions, money and parental absence from work.