Introduction Obstructive sleep disordered breathing (SDB) is highly prevalent in children with Trisomy 21 (T21).1 Adherence to long-term continuous or bilevel pressure support in this population can be difficult comparable to other children.2 However, there is a paucity of longitudinal data examining this within this cohort.
This study aims to examine the adherence to long-term continuous (CPAP) or bi-level (BIPAP) positive pressure support in children with obstructive SDB and T21.
Methods Clinical and telemonitoring data were reviewed for children with T21 who were established on respiratory support for isolated OSA or SDB from 2004–2023. Acceptable respiratory support adherence was defined as using >4 hours/night for >70% of nights. Outcomes were coded as 1- continued usage, 2-weaned, 3- non-adherence, 4- adult services, 5 -care transferred.
Results Data was obtained from 41 patients and results are described in table 1.
14 (34.1%) children were adherent to respiratory support. Of the patients noted to be adherent, none were able to wean and stop respiratory support prior to transition to adult care.
Discussion Adherence to long-term non-invasive respiratory support is low in children with T21. Further data examining the characteristics of children who fail to establish respiratory support is required in order to better predict poor adherence and counter it.
Longitudinal data suggests that patients with T21 who require non-invasive respiratory support for obstructive SDB in childhood will need this therapy long-term and will not wean prior to transition to adult care. This is useful information for counselling families at diagnosis and highlights the importance of intensive multi-disciplinary input and regular remote monitoring of compliance.
Stores G, et al. Sleep disorders and their clinical significance in children with Down syndrome. Developmental Medicine & Child Neurology,2013;55:126–130.
Hudson S, et al. Long-Term Non-invasive Ventilation in Children With Down Syndrome: A Systematic Review. Front Pediatr.2022 23;10:886727.
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