Parental Perceptions of Sleep Disturbances and Sleep-Disordered Breathing in Children With Down Syndrome

Objectives: Children with Down syndrome (DS) have increased difficulty initiating and maintaining sleep (DIMS), excessive daytime sleepiness (EDS), and obstructive sleep apnea (OSA). As part of a quality improvement initiative, parents of children enrolled in the Children's Hospital Boston Down Syndrome Program were surveyed about their child's sleep and breathing patterns while asleep. Methods: An anonymous Internet-based questionnaire was used in the study. Results: The completion rate was 46.5% (255/548). DIMS and EDS were frequently/almost always present in more than half the children. Among parents unconcerned about their child's breathing, 11.8% witnessed apnea and 4.2% gasping/choking more than once monthly. Parents of children status post adenotonsillectomy (AT) reported witnessed apnea (47.5%), gasping/choking (28.9%) more than once monthly. Discussion: There is room for improved screening of sleep disturbances, OSA in children with DS. The high frequency of persistence of OSA following AT should prompt for continued screening following AT.