Indications for home mechanical ventilation in children: changes over four decades.

Home mechanical ventilation (HMV) has been used for more than 40 years in the Netherlands. With this retrospective single-center study, we aimed to evaluate the demographics of children supported by HMV and changes in indications and type of support. We retrieved relevant data of all patients younger than 19 years who started HMV between 1979 and 2023 from a prospective database and from medical notes. A total of 544 children started with HMV (median age 13.1 years (IQR 5-16)). After a rapid increase between 1979 and 2017, the number of children treated with HMV stabilized. Nearly 40% of patients started HMV unplanned, because of failed weaning off the ventilator after surgery or an infection. Thirty percent of all children started with invasive ventilation. A majority of patients had a neuromuscular disorder (NMD) (n = 305, 56%) or a genetic syndrome (n = 85, 16%). The relative contribution of other diseases than NMDs increased in the 21th century. The relative number of patients younger than 5 years using HMV increased significantly over the years, from 13% in 1989-1998 to 30% in 2014-2022. This increase was even more pronounced for children using non-invasive ventilation (NIV), i.e. < 4% till 2003 and 30% in 2019-2022. CONCLUSION: This large longitudinal cohort study shows that the number of children requiring HMV remains stable but that the relative number of young children using HMV and the causes of chronic respiratory failure changed over the years. Also, NIV became the predominant mode in children starting HMV. WHAT IS KNOWN: • The number of children with home mechanical ventilation increased over the last decades. • Neuromuscular diseases are the most common reason for starting home mechanical ventilation. WHAT IS NEW: • The number of children requiring home mechanical ventilation remained stable in recent years. • The relative number of children younger than 5 years using home mechanical ventilation, in particular non-invasive ventilation, increased over the years. • Causes of chronic respiratory failure necessitating home mechanical ventilation changed over the years.