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A national survey of paediatric long-term ventilation in the UK
  1. C Wallis1,
  2. E Jardine2,
  3. S Beaton3,
  4. J Paton4
  1. 1Respiratory Unit, Great Ormond Street Hospital NHS Trust, London, UK
  2. 2Home Ventilation Service, Royal Hospital for Sick Children, Glasgow, UK
  3. 3Faculty of Medicine, University of Glasgow, Glasgow, UK
  4. 4Department of Child Health, Royal Hospital for Sick Children, Glasgow, UK


Aims The last decade has seen a significant increase in the number of children receiving long-term ventilatory (LTV) support. There are a number of reasons for this including improved home ventilators for children, better designed paediatric face masks and a new ethos for long-term respiratory support at home. A previous survey undertaken in 1997 revealed 136 such children. The current number and status are required for allocation of healthcare resources for these high-cost, complex children.

Methods Because of the protean nature of this cohort, it was elected to do a spot census. A standard questionnaire was devised by consensus and 39 lead clinicians were identified who supervise children on LTV in the UK. All children (<17 years) receiving ventilatory support for all/part of the 24-h day for a period of at least 3 months at midnight on the 30th September 2008 were included. Data were entered to an online form and after anonymisation and encryption were stored at a central data monitoring centre.

Results 944 children/young people were identified. 58% were male and 91% lived at home. 212 children were ventilated by tracheostomy while 714 used facial mask interface. Three children had phrenic nerve pacing in addition to a tracheostomy. 18 were unknown. The medical causes for ventilatory support were divided into three main categories:

Respiratory: (350) of which upper airway obstruction and obesity dominated; 11 had chronic lung disease of prematurity;

CNS: (184) of which 57 had congenital central hypoventilation, 22 had high spinal injury; 21 acquired hypoventilation;

Musculoskeletal: (410) the commonest cause was Duchenne muscular dystrophy (92); 64 children had spinal muscular atrophy (SMA) type II and 12 SMA type I.

Conclusions This study has shown a very substantial increase in the numbers of children on LTV since the last UK survey. The increased use of non-invasive ventilation in neuromuscular patients is the main contributor. The vast majority of the children (including those on 24-h tracheostomy ventilation) are managed at home. These data will inform future health provision and also form the basis for a wider study into other aspect of home ventilation in childhood.

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