Adherence to long term non-invasive ventilation in children

Background: Non-invasive ventilation (NIV), including continuous positive airway pressure (CPAP) and bilevel pressure support (BiPAP), has made significant impact on many conditions e.g. neuromuscular, craniofacial, obesity, metabolic diseases. As the indications for long term NIV expands, the number of patients treated increases exponentially, making compliance a key issue. Aim: To assess objective data on adherence to long term NIV in children at a large tertiary centre Method: Adherence data were downloaded from ventilators during routine follow-up sleep studies in the hospital. The most recent downloaded adherence data between Jan 2013- Jan 2015 on active NIV patients (≥3 months from NIV initiation) was analysed. Results: Our NIV service looks after 219 children on NIV (114 Males; median age [range] = 11.2[0.6.-20.1] years). The data of 165 patients on NIV (93 CPAP; 72 BiPAP users) was analysed. The diagnostic categories include: central nervous system (n=15), neuromuscular (n=37), metabolic conditions (n=13), skeletal (n=13), respiratory (n=54), craniofacial (n=33). The median [IQR] percentage of daily use was 86.3 [56-98] %, with median [IQR] usage 8.3[5.8-9.4] hours/night. One hundred forty-one patients used NIV u003e4 hours/night and 24 patients used it ≤4 hours/night. Percentage of daily use was not related to age, duration of treatment, mode of ventilation and diagnostic categories. Conclusion: Our cohort showed a fairly high adherence in terms of percentage of daily use although 14.5% of the group were using NIV≤4 hours/night. Further research in identifying practical barriers to adherence and characterising patients who have the most difficulties adhering to treatment, would help to best direct resources.