Abstract

To characterize practice patterns regarding sleep evaluation and intervention among children with Down syndrome (DS). Data were obtained from electronic health records from 2009 to 2013 for a retrospective cohort of 954 children with DS, aged 5 to 21 years during the time sampled. International Classification of Diseases, Ninth Revision, diagnoses were used to identify children with obstructive sleep apnea and/or behavioral sleep disturbances. Primary outcomes were confirmed by participation in an overnight diagnostic polysomnography (PSG) and/or documented provision of specified sleep interventions including positive airway pressure, otolaryngology (ENT) surgery, sleep medication, and behavioral sleep therapy. Overall, 47.7% of children with DS had undergone PSG, 39.1% had diagnosed sleep problems, and of those diagnosed with sleep problems, 81.2% had received sleep intervention. Consistent with best practice clinical care, sleep treatments matched the diagnosed sleep problems. Age, gender, and race, but not body mass index (BMI), were associated with PSG completion rate and occurrence rates for ENT surgery and sleep medication usage. BMI was associated with obstructive sleep apnea. Despite high rates of reported sleep problems in children with DS, less than half underwent PSG. Children diagnosed with sleep problems received treatment consistent with their sleep diagnosis. However, age and gender were associated with differential rates of treatment delivery that was incongruous with prevalence rates for diagnosed sleep problems. These findings underscore the importance of screening for sleep problems in children with DS, and referring for and providing appropriate targeted sleep interventions.

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