Background Long term ventilation (LTV) refers to mechanical support for breathing either at home or in hospital, for all or part of the day, for at least 3 months. Two national surveys carried out in 1998 and 2008, highlighted the increasing numbers of ventilator dependent children throughout the UK . Our objective was to collect current information about children receiving LTV in the UK, 10 years after the last national survey.
Methods All LTV centres in the UK completed a single time point census survey on 30th September 2019 using an electronic questionnaire. Data included the child’s location, underlying diagnosis, interface and type of respiratory support, and whether disease-modifying drugs affected the decision to initiate LTV in specific groups within this target population.
Results Data was collected from 25 LTV centres. The total study population was 2383 children and young people. The median age of the overall sample was x (range x-x). 40.3% female; 57.2% of those recorded were male. Diagnoses were 417 (17.5%) central nervous system, 692 (29%) musculoskeletal and 1274 (53.5%) a respiratory, of which 31.8% of the total had upper airway obstruction. Notable changes since 1998 were the decline in the use of 24-hour ventilation, negative pressure ventilation and tracheostomy as an interface, and the increase in the proportion of patients treated at home. 115 children had received a disease-modifying drug. The use of Ataluren and Myozme did not influence the decision to treat with LTV, but in 35% of the children treated with Nusinersin the clinician stated that the use of this drug had or may have influenced their decision to initiate LTV.
Conclusion The number of children being treated with LTV has increased by 250% in the last 10 years with notable changes in practice over the last 20 years.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
Statistics from Altmetric.com
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.