Pediatric home ventilation database an effort to improve treatment – an Italian pilot for Europe

Abstract

The comparison of patient-bases, approaches, social support and results of pediatric long-term home ventilation (LTHV) requires the collection of detailed data and careful analysis. In 2016, Italian centers established a national network of hospitals that deal with LTHV. The central purpose was to describe the variation in indications, approaches, structures and policies between different places in Italy. A documentation tool, the Ve.Do. Piccolo database, was developed for children on LTHV. The inclusion criteria were pediatric age (0-18 years) and mechanical ventilation at home for at least three months and six hours per day. By 1.12.2018 the database included 436 patients from 12 Italian hospitals. The age at initiation of ventilation and at last data point was 6 (1-13) years and 12 (5,6-17,3) years respectively (median, IQR). The distribution of underlying diseases is shown in Figure 1. Details on the indication, interface, ventilatory modes, settings, duration, home and social support are presented. We have shown that multi-center data collection is feasible and informative. As a next step we aim to extend data collection to European centers outside of Italy. A large participating European network of LTHV centers could improve standardization and quality of care through benchmarking.