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Adherence to Symptom-Based Care Guidelines for Down Syndrome.

Stephanie L Santoro1,2, Han Yin1, Robert J Hopkin3,4

  • 11 Nationwide Children's Hospital, Columbus, OH, USA.

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|June 5, 2016
PubMed
Summary

Adherence to American Academy of Pediatrics (AAP) guidelines for Down syndrome health supervision is low. Symptom-based studies are infrequently performed, even when symptoms are present, indicating a gap in recommended care for children with Down syndrome.

Keywords:
Down syndromeadherencehealth care guidelinesobstructive sleep apneasleep study

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Area of Science:

  • Pediatric Health Supervision
  • Genetics and Developmental Disorders
  • Clinical Practice Guidelines

Background:

  • The American Academy of Pediatrics (AAP) provides health supervision guidelines for children with Down syndrome.
  • These guidelines include recommendations for symptom-based studies to monitor potential complications.
  • Assessing adherence to these evidence-based recommendations is crucial for optimizing care.

Purpose of the Study:

  • To evaluate adherence to symptom-based studies recommended in AAP guidelines for Down syndrome.
  • To determine the correlation between symptom presence and the completion of associated diagnostic studies.
  • To identify gaps in the implementation of recommended health supervision for children with Down syndrome.

Main Methods:

  • Retrospective chart review conducted across 24 pediatric care sites.
  • Analysis of well-child visit notes for 264 children with Down syndrome.
  • Examined adherence to four key symptom-based recommendations: cervical spine radiograph, video swallow study, celiac study (tissue transglutaminase), and sleep study.

Main Results:

  • Adherence rates for recommended symptom-based studies varied significantly (0% to 79% completion).
  • Symptom-based studies were performed in only 22% to 36% of patients.
  • A positive correlation between documented symptoms and the completion of corresponding studies was not observed.

Conclusions:

  • Current adherence to symptom-based screening and associated studies for Down syndrome is low.
  • Studies were often performed in the absence of documented symptoms, contradicting AAP recommendations.
  • There is a significant need to improve the implementation of guideline-recommended care for children with Down syndrome.