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Clin Pediatr (Phila). 2017 Feb;56(2):150-156. doi: 10.1177/0009922816652416. Epub 2016 Jul 19.

Adherence to Symptom-Based Care Guidelines for Down Syndrome.

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1 Nationwide Children's Hospital, Columbus, OH, USA.
2 Ohio State University, Columbus, OH, USA.
3 Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
4 University of Cincinnati College of Medicine, Cincinnati, OH, USA.


To assess adherence to symptom-based studies recommended in the health supervision guidelines for Down syndrome from the American Academy of Pediatrics (AAP), 24 pediatric care sites participated in retrospective chart review. Symptom-based screening and 4 associated recommendations, including cervical spine radiograph, video swallow study, celiac study with tissue transglutaminase and sleep study were analyzed by reviewing well-child visit notes of 264 children with Down syndrome. Given trends toward symptom-based screens, Pearson's chi-square test and Fisher's exact test were used to determine the association between symptom presence and receiving corresponding symptom-based screens. Adherence rates were widely variable ranging from 0% to 79% completion. Symptom-based studies were performed in 22% to 36% of patients. Symptom screens were documented positive in many patients, but the presence of symptoms did not correlate with completion of symptom-based screens. Symptom-based screening is low; associated studies were performed in patients without documented symptoms contrary to AAP recommendation.


Down syndrome; adherence; health care guidelines; obstructive sleep apnea; sleep study

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