P2.E094: Baseline Survey for Children's Hospitals Establishing Programs to Track and Treat Children with Special Health Care Needs and Medical Complexity

Background: There are more than 10 million children in the United States that are considered Children and Youth with Special Health Care Needs (CYSHCN) and Children with Medical Complexity (CMC). These groups are identified by their increased risk for chronic physical, developmental, behavioral or emotional conditions, often requiring technology assistance and health services beyond general child health requirements. Due to advancement in technology, these children are living longer and into adulthood. This patient population accounts for 20% of visits to pediatric emergency departments and 13% of all emergency medical service transports. The objective of this survey tool is to collect baseline data for Children's Hospitals implementing a program to track and treat CYSHCN and CMC, which will allow hospitals to assess the effectiveness of the program.

Methods: Children’s Hospitals were identified by their participation in the Pediatric Pandemic Network. This IRB exempt tool was distributed via REDCap, a secure system to manage and build online surveys. The tool seeks to identify questions specific to CYSHCN and CMC, including who provides direct care, criteria for identifying patients to enroll in the tracking program, creation of emergency care plans, disaster planning, education time for providers, number of tracheostomy/ventilatory dependent patients seen in the ED, deaths or near misses involving tracheostomy emergencies, and budget allocated for such a program.

Results: 12 hospitals received the survey tool, of which 11 completed it. Data suggests that the majority of hospitals do not have a way to track CYSHCN and CMC and that hospitals don’t have a way to identify patients for enrollment. Disaster planning is not part of care plans based on results, and little time is spend educating staff. The majority of hospitals surveyed do not know how many tracheostomy/ventilatory dependent patients were seen, had a death or near miss event at their institution.

Conclusion: The majority of hospitals surveyed don’t have a way to track CYSHCN and CMC. An electronic database accessible to prehospital and hospital providers with emergency care plans specific to each CYSHCN and CMC may improve care.