Stakeholder Buy-In and Physician Education Improve Adherence to Guidelines for Down Syndrome

J Pediatr. 2016 Apr;171:262-8.e1-2. doi: 10.1016/j.jpeds.2015.12.026. Epub 2016 Jan 29.


Objectives: To assess adherence to the 2011 American Academy of Pediatrics (AAP) health supervision guidelines for Down syndrome, to determine whether pediatrician education improves adherence, and to evaluate stakeholder attitudes toward these guidelines.

Study design: Twenty-two pediatric care sites participated in chart review of adherence to the components of the AAP guidelines for Down syndrome in this longitudinal cohort study. We analyzed universal recommendations which apply to all children with Down syndrome. Thirteen pediatric practices caring for 82 patients with Down syndrome received educational information. Frequency calculations with Bonferroni adjustment of the P value threshold (P = .05/9 = .0056) were performed. Adherence rates were compared between cohorts and within the individual before and after intervention using 2 × 2 contingency tables and goodness-of-fit tests. Pediatricians and parents of children with Down syndrome completed an anonymous survey regarding their attitudes toward the guidelines.

Results: Statistically significant increases in adherence were seen in 5 of the 8 universal recommendations following pediatrician education (P ≤ .002), including cardiology and genetics visits, rates of echocardiography, annual audiology testing, and sleep studies by age 4 years. Both physicians and parents reported generally positive views of the guidelines, yet baseline adherence rates were suboptimal. Pediatrician education preferences include directly integrating the guidelines into an electronic medical record system.

Conclusion: Stakeholder attitudes reflect a willingness to follow the AAP guidelines for Down syndrome. Providing rapid access to simple, clear reminders of recommended assessments successfully improved adherence to the AAP guidelines for Down syndrome.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Audiology
  • Child
  • Child, Preschool
  • Down Syndrome / therapy*
  • Echocardiography
  • Electronic Health Records
  • Female
  • Guideline Adherence
  • Humans
  • Male
  • Parents
  • Patient Compliance
  • Patient Education as Topic*
  • Pediatrics / methods
  • Pediatrics / standards*
  • Physician-Patient Relations
  • Physicians
  • Retrospective Studies
  • Thyrotropin / blood


  • Thyrotropin