Aims Non-invasive ventilation (NIV) is now an established treatment for children with sleep disordered breathing. We report our experience of starting children on NIV over 12 years and aim to identify areas for future improvement.
Methods We retrospectively analysed the data of all children we attempted to established on NIV in our centre between July 2000 and July 2012. We noted the clinical indication, whether NIV was successful and, if available, any sleep study results obtained.
Results NIV was attempted in 122 patients. 46 (37.7%) had obstructive sleep apnoea (21 related to obesity); 26 (22.1%) neuromuscular disease (2 additional children with SMA1 had a brief trial of NIV); 16 (13.1%) Down’s syndrome; 11 (9%) craniofacial or skeletal disorders; 7 (6%) central hypoventilation; 5 (4%) mucopolysaccharidoses; 8 (7%) had other disorders.
66/122 had pre and post-establishment oximetry performed with 92.4% showing improvement in desaturation index (DSI) (mean DSI was 20.7 pre-establishment, and 2.5 post-establishment, p < 0.01).
111 children (91%) were successfully discharged from hospital on NIV. Of 11 children who failed to establish 7 had Down’s syndrome, 2 others had SMA1 and the families chose not to proceed. Median patient age was 10.61 years (range 0.71–18.17), whilst median age of those that failed to establish was 5.95 years.
Of 111 children discharged on NIV, 12 (10.8%) stopped due to poor acceptance of treatment (4 of these had Down’s syndrome), 54 (48.6%) continue on NIV within paediatrics, 20 (18% ) have transferred to adult services, 9 (8.1%) have stopped due to an improvement in their medical condition over time, 7 (6.31%) stopped as no clinical improvement was achieved with therapy, 6 (5.41%) have died and 3 (2.7%) have been lost to follow up.
Conclusion Overall long-term success rates of NIV were high, with the majority of children continuing on ventilation under paediatric or adult services or stopping due to clinical reasons. The main reason for failure of establishment or maintenance was non-acceptance. This was significantly greater in children with Down’s syndrome and new strategies must be found to improve acceptance with these patients.