WIP 123 - Primary Initiative: Baseline Survey for Children's Hospitals Establishing Programs to Track and Treat Children with Medical Complexity

Poster Number: WIP 123
Publication Number: WIP 123.916

Background: 10 million children in the US are considered Children and Youth with Special Health Care Needs (CYSHCN) and Children with Medical Complexity (CMC). This population has or is at an increased risk for chronic physical, developmental, behavioral or emotional conditions, or have a chronic medical condition which can be associated with technology assistance. Through advancement in technology, these children are living longer. Studies show that CYSHCN and CMC account for 20% of visits to pediatric emergency departments and 13% of all emergency medical service transports. Prehospital and hospital provider's comfort level caring for these children vary. An electronic database accessible to prehospital and hospital providers with emergency care plans specific to each CYSHCN and CMC can ease the burden.

Objective: 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. The baseline data will allow hospitals to measure the success of the program.

Design/Methods: Children’s Hospitals participating in the Pediatric Pandemic Network were surveyed. The survey tool was distributed via REDCap and was IRB exempt. The tool seeks to identify who provides direct care, criteria for identifying patients to enroll, creation of emergency care plans, disaster planning, education for providers, deaths or near misses involving tracheostomy emergencies, and budget allocation specific to CYSHCN and CMC. Data collection will be completed by the end of this year. Preliminary data suggests that most hospitals do not have a way to track CYSHCN and CMC, disaster planning is not considered, staff education is limited, and data regarding tracheostomy/ventilatory dependent patients is lacking. Next steps include revision of the survey tool and distribution to all Children’s Hospitals in the US. Follow-up surveys after implantation of a program will be sent to assess improvement. Caregivers of CYSHCN or CMC will also be surveyed, pre and post enrollment, to determine level of comfort and estimation of quality of care.