Telemedicine tools for paediatric patients on home mechanical ventilation

<bold>Introduction:</bold> More and more children require highly specialised services, such as home mechanical ventilation (HMV). Close monitoring is needed to assess the effectiveness of therapy and detect adverse effects. <bold>Aim:</bold> To implement a telemedicine programme for children (0-18 years) with HMV that reduces face-to-face visits and admissions for initiation and follow-up of HMV. <bold>Methods:</bold> Single-centre descriptive observational study. Pre and post-implantation health-related quality of life (pre-HRQoL, post-HRQoL) were assessed using the Paediatrics Quality of life-4.0 questionnaire; family impact was assessed using the PedsQL-2.0 questionnaire and a structured survey. HMV monitoring data and patient physiological variables were recorded through the EveryWare platform (Breas®). The study was approved by the centre's ethics committee. <bold>Results:</bold> 25 patients were included, 8% on invasive ventilation (IMV). The mean pre-HRQoL score of patients and parents was 64.1/100 and 57.14/100. Patients on Noninvasive ventilation have better HRQoL than patients on IMV (p>0.05). The mean family impact score was 59.3/100. Pre-implement, 96% of patients reported difficulties in medical follow-up (time-consuming scheduled visits at the hospital). Thirty-four remote monitoring sessions were performed, 16 of them indicating that changes in ventilator settings were necessary. No adverse effects were detected, post-HRQoL did not differ significantly from pre-HRQoL. The programme was positively rated, for saving time of healthcare-related visits. <bold>Conclusions:</bold> Telemedicine tools are useful for HMV follow-up, avoiding hospital visits and admissions, and are well accepted by patients and their families, with a potential improve in their daily life.