National registry for home mechanical ventilation in children from Turkey

Abstract

Background: Advances in neonatal and pediatric intensive care have improved patient survival rates, emphasizing the need for respiratory support in cases of chronic respiratory failure, resulting in the establishment of the Turkish National Pediatric Patients Receiving Home Mechanical Ventilation (HMV) Support Registration System in 2023. This study aims to present the initial findings of the registry. Methods: In this cross-sectional study, epidemiological and demographic data were obtained from the registry and compared between invasive ventilation (IV) and non-IV (NIV) groups. Results: The study included 952 patients registered from 23 centers with a median (interquartile range) age of 6.0 (3.0–12.0) years. IV support was observed in 51.1% of patients (n = 486). There was no difference in sex between IV and NIV groups, but a significant difference in age, nutrition, mobility status, and education were observed between the subgroups. The largest patient group had neuromuscular disease, with spinal muscular atrophy being the most common primary diagnosis (15.7%). Most of the caregivers (78.7% in the NIV group and 93.8% in the IV group) received formal training before the initiation of HMV. Conclusion: Turkey’s first registry for pediatric HMV patients is introduced. This system helps understand and solve mobility and education issues for these patients in our country. Collaboration with relevant ministries is crucial. In addition, although most of the caregivers have received training before discharge, efforts are still needed to ensure that this rate is 100%. The long-term results will be presented in the future.