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Symptom care approach to noninvasive ventilatory support in children with complex neural disability
Lily Morrison1, Sadasivam Suresh2,3, Marie-Josee Leclerc3
1University of Queensland and Ochsner Health System, Brisbane, Australia.
Insights
Noninvasive ventilation (NIV) shows promise in improving sleep metrics for children with severe neurological disabilities, though long-term benefits require further study. Side effects were minimal, but hospital admissions did not decrease.
Area of Science:
- Pediatric Pulmonology
- Neurology
- Sleep Medicine
Background:
- Sleep-disordered breathing (SDB) is a significant concern in children with severe neurological disabilities like cerebral palsy.
- Noninvasive ventilation (NIV) is increasingly used, but its specific role and indications in this population are not well-defined.
Purpose of the Study:
- To investigate the indications, patient acceptance, and outcomes of NIV use in children with severe neurological disabilities and SDB.
- To evaluate the effectiveness of NIV in improving sleep parameters and oxygen saturation.
Main Methods:
- Retrospective data extraction from children with severe neurological disabilities (GMFCS V equivalent) initiated on NIV over a 5-year period in Queensland.
- Collection of demographic, clinical, hospitalization, polysomnography data, and caregiver-reported side effects and adherence.
Main Results:
- Twelve out of fourteen children had obstructive sleep apnea as the primary indication for NIV.
- While the apnea-hypopnea index showed improvement, it was not statistically significant. However, there was a significant improvement in oxygen saturation (SpO2 < 95%).
- Reported side effects were minimal, and no reduction in hospital admissions was observed in the 12 months post-NIV initiation.
Conclusions:
- NIV appears to improve polysomnography parameters in children with severe neurological disability and SDB.
- Long-term outcomes and quality of life impacts of NIV in this cohort require further investigation.
- Careful consideration of ethical issues and overall patient benefit is crucial before initiating NIV therapy.
Study Objectives:
Sleep-disordered breathing is a major cause of morbidity and mortality among pediatric patients with severe neurological disabilities such as cerebral palsy. Despite increasing use of noninvasive ventilation (NIV) in this group, there remains a lack of consensus about its role and indications. We aim to explore the indications, acceptability, and outcomes of a cohort of children with severe, complex neurological disability and sleep-disordered breathing, managed with NIV.
Methods:
Data were retrospectively extracted on children with severe neurological disabilities (Gross Motor Function Classification System V equivalent) initiated on NIV in Queensland over a 5-year period. Demographic, clinical, hospitalization, and polysomnography data were collected, as well as caregiver-reported side effects and NIV adherence.
Results:
Fourteen (median age 9.1 years; 6 female) children were included, 8 with cerebral palsy and 6 with other complex neurological disabilities. Obstructive sleep apnea was the most common indication for NIV (n = 12). The median (interquartile range) apnea-hypopnea index improved on NIV [pre-NIV 21.3 (interquartile range 10.0-28.2) vs post-NIV 12.2 (interquartile range 2.8-15.2)], although this was not statistically significant. There was significant improvement in proportion of time spent with SpO2 < 95% (22.2% pre-NIV vs 7.85% post-NIV; P < .05). Reported side effects were minimal. There was no reduction in hospital admissions in the 12 months post-NIV initiation.
Conclusions:
Our findings suggest that NIV improves polysomnography parameters among children with severe neurological disability. Long-term outcomes and overall impact on quality of life remain unclear. Ethical issues and overall benefit must be considered before embarking on this mode of therapy.
Citation:
Morrison L, Suresh S, Leclerc MJ, Kapur N. Symptom care approach to noninvasive ventilatory support in children with complex neural disability. J Clin Sleep Med. 2022;18(4):1145-1151.
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