Accuracy of Parental Perception of Nighttime Breathing in Children with Down Syndrome

Abstract

Objective In 2011, the American Academy of Pediatrics published a guideline for children with Down syndrome (DS), recommending a polysomnogram (PSG) by age 4 years regardless of symptoms. Their rationale was based on 2 publications with small cohorts, where at least 50% of the children had no obstructive sleep apnea (OSA) symptoms but their PSG results were abnormal. The American Academy of Otolaryngology-Head and Neck Surgery Foundation published a clinical practice guideline recommending PSG prior to adenotonsillectomy for these children. This study aimed to assess parents' accuracy of their children's breathing patterns as compared with PSGs in a larger cohort of children with DS. Study Design Case series with chart review. Setting Tertiary care academic pediatric hospital. Subjects and Methods Sleep intake forms assessing frequency of parent-observed apnea, snoring, and restless sleep were analyzed. None of the children had a previous tonsillectomy. Two groups were analyzed according to symptoms: infrequent (<3 nights per week on all questions answered) and frequent (≥6 nights per week on at least 1 question). OSA severity was categorized as follows: normal, <2 events per hour; mild, 2 to 4.9; moderate, 5 to 9.9; and severe, ≥10. Results A total of 113 children met inclusion criteria: 34% (n = 38) had infrequent symptoms, and 66% (n = 75) had frequent symptoms. Parents were unable to predict the presence or absence of OSA by nighttime symptoms ( P = .60). The risk of OSA for children with frequent symptoms versus those with infrequent symptoms was 1.04 (95% CI, 0.89-1.3). Conclusion Parents of DS children are unable to predict the presence or absence of OSA by nighttime symptoms, nor are they able to determine its severity.

Obstructive sleep apnea in patients with Down syndrome: current perspectives

“…Prior research has shown that up to 50% of children with DS without any sleep-related symptomatology per parental report will have abnormal PSG. 15 Likewise, subsequent research has also demonstrated that symptoms do not predict the presence or absence of OSA by PSG in this population. 16 Due to the combination of high prevalence of OSA in individuals with DS and the inability to predict its presence based on clinical symptoms, in 2011 the American Academy of Pediatrics began recommending PSG routinely for all children with DS by 4 years of age, regardless of symptom history.…”

Parental perceived child sleep problems: A concept analysis

“…During the full‐text screening process, we found that some studies only invited parents to fill out questionnaires to record children's sleep outcomes without asking explicitly whether parents perceived these sleep outcomes as problematic. For example, a study asked parents to observe and report the frequency of their children's apnea, snoring, and restless sleep, but did not ask parents whether they perceive these signs and behaviors as problematic (Friedman et al, 2018). The results of these reports did not necessarily indicate that parents of these children believed their child had a sleep problem.…”

Evaluating the impact of adenotonsillectomy for pediatric sleep‐disordered breathing on parental sleep

“…An increase in snoring severity can conceivably lead to interrupted parental sleep or the perception of a more severe symptom profile leading to increased nocturnal anxiety and poorer sleep. Parents historically have not been able to predict presence or absence of OSA based on nocturnal symptoms . In the future, it would be interesting to evaluate parental perceptions of disease severity as it relates to their child's symptoms, which may correlate with nocturnal anxiety and poor sleep patterns.…”