Home clinical telemonitoring and domiciliar pneumologic medical assistance in amyotrophic lateral sclerosis ventilated patients

Background: Amyotrophic Lateral Sclerosis (ALS) is a progressive fatal neurodegenerative disease with respiratory impairment (RI). ASL patients (pts) with RI are home-treated with non-invasive ventilation (NIV), only a minor percentage with invasive tracheostomy ventilation (IVt). Telemonitoring can be useful to improve home-treating clinical problems and optimize home ventilation. Methods: From April 2013 to October 2014, ALS pts have been telemonitored with financial support of Piemonte Region; the project consisted of dedicated pneumologist for home visits, call center, patient-dedicated tablet, oximeter for real time data, monthly monitoring of nocturnal oximetry and data base. Each patient had to answer on the tablet to daily and fortnight questions about symptoms and mechanical ventilation parameters; the answers could determine telephone or video call with pneumologist, home medical visit or hospitalization. Results: 41 (30 NIV, 11 IVt) ALS pts have been enrolled; 6081 daily clinical questionnaires (total adherence 58%, 65% IVt, 51% NIV) and 510 fortnight questionnaires (total adherence 76%, 77% IVt, 80% NIV) have been answered. Based on the answers, 15 unscheduled home visits and 113 telephone contacts with pneumologist have been performed. 8 NIV pts needed hospitalization for 99 days (3.1 day/pt/yr). Mortality in NIV was 10 pts (33%). In a similar group of 24 NIV-ALS pts without telemonitoring in 2012, 8 pts needed hospitalization for 132 days (5,5 day/pt/yr) and mortality was 8 pts (33%). Conclusion: In our experience, telemonitoring ALS patients in NIV doesn9t change mortality but reduces the need for hospitalization and costs for patient.