Aims Home non-invasive ventilation (NIV) is an established treatment for children with sleep-disordered breathing. There is little evidence available regarding NIV compliance and the factors that affect this. Accurate compliance data from individual ventilators is readily available and gives a new opportunity to explore this further. The aim of this research was to describe and analyse adherence with NIV among established patients and determine if this was significantly affected by age, gender, diagnosis, time since commencement, apnoea-hypopnoea index (AHI), mean daily usage, leak or pressure.
Methods Ventilator download-data from sleep study databases and electronic patient-notes were retrospectively reviewed. Patients aged 0–18, established on NIV with between 30–182 days of available data were included. Adherence, defined as percentage of nights with ≥4 h use, was compared by diagnosis, gender and age and correlated with the above factors.
Results 102 children were included, 67% were male and median age was 13 years (range 0.25–18). The mean adherence for all patients was 64.2%. There was a strong positive correlation between mean daily usage and compliance (r = 0.74). Children with Down’s syndrome had a mean adherence of 37.9%, considerably lower than in other diagnoses including obstructive sleep apnoea (62.3%), craniofacial conditions (61.7%), neuromuscular disease (64.7%) and conditions with central hypopnoeas (80.5%). Gender and presence of leak did not affect adherence and no correlation between adherence and ventilator pressure (r = 0.30), age (r = 0.05) or AHI (r = 0.08) was demonstrated.
Conclusion It is clear from the few correlations found that patients are heterogeneous and the challenges multifactorial. A better understanding of adherence levels in individual patients can now enable us to have open discussions with families to address challenges they face with the use of NIV. Children with Down’s syndrome are normally carefully selected prior to establishment of NIV because of known difficulties with treatment. Despite this, they are still the group with poorest adherence, highlighting the need for novel approaches to improve this. Ongoing use of NIV does suggest that although adherence is far from perfect, patients must gain some clinical benefit and the levels of adherence truly required to reduce long term complications is still not known.
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