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Use of Electronic Health Record Integration for Down Syndrome Guidelines
Stephanie L Santoro1,2, Thomas Bartman3,2, Clifford L Cua3,2
1Nationwide Children's Hospital, Columbus, Ohio; stephanielynnsantoro@gmail.com.
Insights
Integrating electronic health records (EHR) with age-based logic improved adherence to Down syndrome care guidelines. This quality improvement initiative enhanced screening and referrals for children with Down syndrome.
Area of Science:
- Pediatrics
- Genetics
- Health Informatics
Background:
- Established guidelines for Down syndrome care are often not consistently followed.
- Improving adherence to these guidelines is crucial for comprehensive patient management.
Purpose of the Study:
- To integrate American Academy of Pediatrics guidelines for Down syndrome care into the electronic health record (EHR).
- To enhance guideline adherence throughout the lifespan of individuals with Down syndrome.
Main Methods:
- Implemented two EHR integration methods with age-based logic: best-practice advisories for genetics referral and a health maintenance record for key tests.
- Conducted a retrospective chart review of 235 patients with Down syndrome (ages 0-32) across various clinical settings.
- Analyzed adherence using statistical process control charts.
Main Results:
- EHR integration demonstrated a significant increase in adherence to care recommendations, from 61.6% to 77.3% (P < .001).
- Adherence improved for genetic counseling, blood count/hemoglobin testing, thyrotropin testing, echocardiogram, and sleep studies.
- Baseline adherence varied, with sleep study and hemoglobin testing at 51% and echocardiogram at 94%.
Conclusions:
- Integrating Down syndrome care aspects into the EHR effectively improves adherence to guideline recommendations.
- Future quality improvement efforts should prioritize older children and adults with Down syndrome.
Objectives:
Established guidelines from the American Academy of Pediatrics for the care of patients with Down syndrome are often not followed. Our goal was to integrate aspects of the guidelines into the electronic health record (EHR) to improve guideline adherence throughout a child's life span.
Methods:
Two methods of EHR integration with age-based logic were created and implemented in June 2016: (1) a best-practice advisory that prompts an order for referral to genetics; and (2) a health maintenance record that tracks completion of complete blood cell count and/or hemoglobin testing, thyrotropin testing, echocardiogram, and sleep study. Retrospective chart review of patients with Down syndrome and visits to locations with EHR integration (NICUs, primary care centers, and genetics clinics) assessed adherence to the components of EHR integration; the impact was analyzed through statistical process control charts.
Results:
From July 2015 to October 2017, 235 patients with Down syndrome (ages 0 to 32 years) had 466 visits to the EHR integration locations. Baseline adherence for individual components ranged from 51% (sleep study and hemoglobin testing) to 94% (echocardiogram). EHR integration was associated with a shift in adherence to all select recommendations from 61.6% to 77.3% (P < .001) including: genetic counseling, complete blood cell count and/or hemoglobin testing, thyrotropin testing, echocardiogram, and sleep study.
Conclusions:
Integrating specific aspects of Down syndrome care into the EHR can improve adherence to guideline recommendations that span the life of a child. Future quality improvement should be focused on older children and adults with Down syndrome.
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