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Published on: October 2, 2019
Parental perceptions of sleep disturbances and sleep-disordered breathing in children with Down syndrome
Dennis Rosen1, Angela Lombardo, Brian Skotko
1Division of Respiratory Diseases, Children’s Hospital Boston, 300 Longwood Avenue, Boston, MA 02115, USA. dennis.rosen@childrens.harvard.edu
Insights
Children with Down syndrome frequently experience sleep problems like difficulty sleeping and daytime sleepiness. Many children with Down syndrome continue to have obstructive sleep apnea even after surgery, indicating a need for better screening.
Area of Science:
- Pediatric Sleep Medicine
- Genetics and Rare Diseases
Background:
- Children with Down syndrome (DS) exhibit higher incidences of sleep disturbances, including difficulty initiating and maintaining sleep (DIMS), excessive daytime sleepiness (EDS), and obstructive sleep apnea (OSA).
- These sleep issues can significantly impact the quality of life and overall health of children with DS.
Purpose of the Study:
- To assess the prevalence of sleep and breathing pattern disturbances in children with Down syndrome.
- To identify the need for improved screening protocols for sleep disorders in this population.
Main Methods:
- An anonymous, internet-based questionnaire was administered to parents of children within the Children's Hospital Boston Down Syndrome Program.
- The survey collected data on sleep patterns, breathing during sleep, and history of surgical interventions like adenotonsillectomy (AT).
Main Results:
- The study achieved a 46.5% response rate (255/548 parents).
- More than half of the children experienced DIMS and EDS frequently or almost always.
- Among parents not concerned about breathing, 11.8% reported witnessed apnea and 4.2% reported gasping/choking episodes monthly. In children post-adenotonsillectomy (AT), 47.5% reported witnessed apnea and 28.9% reported gasping/choking monthly.
Conclusions:
- There is a significant need for enhanced screening of sleep disturbances and OSA in children with Down syndrome.
- The high rate of persistent OSA after adenotonsillectomy underscores the importance of ongoing monitoring and screening post-surgery.
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.
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