PC2173: Improving Care for Individuals with down Syndrome in the Military Health System

Purpose/Objectives: The American Academy of Pediatrics has published supervision guidelines for health maintenance for individuals with Down Syndrome (DS). Patients with DS within the Military Health System (MHS) had decreased rates of recommended care of up to 20% throughout 2020 and 2021. The primary objective was the creation of sustainable interventions that improve patient utilization of preventive screening services for children with DS in the MHS.

Design/Methods: The Defense Health Agency (DHA) Complex Pediatrics Clinical Community initiated a Quality Improvement project in July 2020. Nine teams, with 60+ participants, represent 12 DHA Markets and 4 Small/Stand-Alone Markets. Available tools include a dashboard with 7 recommended DS health maintenance care control charts and a real-time patient registry for approximately 2700-2800 patients with DS. Interventions identified included:

- Outreach to pediatric and family medicine leaders and primary care managers (PCMs) about project and registry
- Sleep Medicine outreach to families with toddlers requiring sleep study
- Partnered with multiple specialists to recapture care within MHS
- Participant served as a mini-case manager, reminder emails to PCMs of needed or upcoming care, and offered to help PCMs place and navigate referrals
- Created patient/family handbook for distribution to families of children with DS
- Engagement with Children’s Hospital DS clinics
- Electronic Health Record prompts, reminders, and shortcuts

Results: MHS-wide snapshot of outcomes through January 2022 (updated monthly with a 3-month delay to capture private care claims) showed improvement from lowest pandemic levels in 4 of the 7 metrics with registry estimates for March 2022 showing even greater improvements in 6 of the 7 metrics.

86% - echocardiogram for < 2 year olds (registry suggests 93% in March 2022)
50% - thyroid testing within 12 months (registry: 69%)
47% - hemoglobin within 12 months (registry: 46%)
42% - ophthalmology exam up to date (registry: 49%)
41% - sleep studies for 4 & 5 year olds (registry: 53%)
30% - genetics visit for < 2 year olds (registry: 34%)
27% - audiogram up to date (registry: 32%)

Conclusion/Discussion: Interventions within the MHS targeted improving coordination and communication between subspecialty clinics, PCMs, and beneficiaries, and led to temporally-related improvements. Such services are typically performed by case managers and suggests increased case management services for complex pediatric patients could improve preventive care utilization. The project continues with regional adjustment of implemented interventions and registry data suggest recommended care rates will continue to improve for DS patients within the MHS.