Pediatrician Use of Down Syndrome Health Supervision Guidelines

Abstract

Objective: The primary care of children with Down syndrome (DS) requires close attention to specific medical vulnerabilities to maximize quality of life and prevent secondary disability. To help optimize adulthood outcomes for children with DS, the AAP Council on Genetics published health supervision guidelines to promote standardized care that adheres to the latest evidence based information. Our primary objective was to determine primary care pediatrician comfort, familiarity and frequency of referral to the 2011 AAP health supervision guidelines for children with DS. A secondary objective was to identify interventions that would improve compliance. Methods:A voluntary, self-administered e-mail survey was distributed to Washington State AAP members using Survey Monkey. The questionnaire targeted information regarding demographics, guideline knowledge, perceived barriers to guideline utilization and interventions to improve use. General pediatricians living in Washington State with self-reported past, current or expected future experience with the pediatric DS population were included.Results: Our response rate was 17% (N=161). Approximately 80% of pediatricians reported being comfortable using guidelines. About 20% of pediatricians were unfamiliar with the guidelines and do not refer to them. An additional 20% refer to the guidelines only sometimes. When asked a specific question regarding a guideline recommendation, 72% answered incorrectly. Over three-quarters of participants reported that electronic health record reminders would be the most beneficial. Conclusions:Opportunities to improve general pediatrician awareness and utilization of the DS guidelines exist. The most beneficial perceived intervention among pediatricians is guideline integration into the electronic health record. Studies measuring compliance and awareness of guidelines with a variety of interventions will be necessary in the future.

Pediatric Comorbidities and Medical Complications Identified in Children with Down Syndrome

“…Current AAP Guidelines recommend testing with an echocardiogram at birth, audiologic and ophthalmologic evaluations, thyroid labs, a swallow study if a feeding problem is present and a sleep study at four years of age. Although increased comorbidity incidence has been identified, only 5-10% of the patient population are reported to be in compliance with these guidelines [3].…”