Long term non-invasive ventilation in children: impact on survival and transition to adult care

PLoS One. 2015 May 1;10(5):e0125839. doi: 10.1371/journal.pone.0125839. eCollection 2015.

Abstract

Background: The number of children receiving domiciliary ventilatory support has grown over the last few decades driven largely by the introduction and widening applications of non-invasive ventilation. Ventilatory support may be used with the intention of increasing survival, or to facilitate discharge home and/or to palliate symptoms. However, the outcome of this intervention and the number of children transitioning to adult care as a consequence of longer survival is not yet clear.

Methods: In this retrospective cohort study, we analysed the outcome in children (<17 years) started on home NIV at Royal Brompton Hospital over an 18 year period 1993-2011. The aim was to establish for different diagnostic groups: survival rate, likelihood of early death depending on diagnosis or discontinuation of ventilation, and the proportion transitioning to adult care.

Results: 496 children were commenced on home non invasive ventilation; follow-up data were available in 449 (91%). Fifty six per cent (n=254) had neuromuscular disease. Ventilation was started at a median age (IQR) 10 (3-15) years. Thirteen percent (n=59) were less than 1 year old. Forty percent (n=181) have transitioned to adult care. Twenty four percent (n=109) of patients have died, and nine percent (n=42) were able to discontinue ventilatory support.

Conclusion: Long term ventilation is associated with an increase in survival in a range of conditions leading to ventilatory failure in children, resulting in increasing numbers surviving to adulthood. This has significant implications for planning transition and adult care facilities.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adult
  • Child
  • Child, Preschool
  • Cohort Studies
  • Female
  • Home Care Services*
  • Humans
  • Infant
  • Male
  • Neuromuscular Diseases / epidemiology*
  • Neuromuscular Diseases / physiopathology
  • Neuromuscular Diseases / therapy
  • Noninvasive Ventilation*
  • Respiratory Insufficiency / epidemiology*
  • Respiratory Insufficiency / physiopathology
  • Respiratory Insufficiency / therapy
  • Retrospective Studies
  • Survival Rate
  • Transition to Adult Care

Grant support

The authors were supported by the NIHR Respiratory Disease Biomedical Research Unit at the Royal Brompton and Harefield NHS Foundation Trust and Imperial College London. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.