Emergency Care Action Plans for Infants with Medical Complexity

Launched by UNIVERSITY OF VERMONT · May 30, 2024

Keywords

ClinConnect Summary

This study is testing an Emergency Care Action Plan (ECAP) for babies with medical complexity. The ECAP is a short, pre-filled plan that sits in the child’s electronic medical record and is shared with both families and the care team. It helps guide emergency care by listing who to contact, a quick summary of the child’s health, common emergency scenarios and suggested actions, medications, technology the child uses, and other important details. The trial compares ECAP to standard care in about 50 infants aged 0 to 6 months who are in the NICU at the University of Vermont Medical Center. Researchers want to see if ECAP can reduce hospital days and emergency visits, and they’ll also look at costs and how easy or feasible it is to use, from the perspectives of families and providers. The study follows families for one year after discharge from the NICU.

Who can join and what to expect: Eligible babies are 0–6 months old, admitted to the University of Vermont NICU, and identified as having medical complexity. A parent or legal guardian must agree to participate and plan to receive care through the University of Vermont Health Network during the year of the study. If there isn’t a willing caregiver or if care won’t be within the network, the baby would not be eligible. If enrolled, babies are randomly assigned to either receive the ECAP or to receive standard care. The ECAP is created together by the caregivers and the care team and will be available in the patient’s record and as a paper copy for easy access. Caregivers will complete brief surveys every few months for a year, and the researchers will track health care use, including inpatient days, emergency department visits, and other outcomes, as well as caregiver stress and confidence in managing the child’s care. Enrollment began in 2024, and the study is currently enrolling by invitation, with results not yet available; the estimated study completion is August 2028.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • Age 0 to 6 months
• • Admitted to the University of Vermont Medical Center Neonatal Intensive Care Unit (NICU)
• • Meets or is expected to meet Children with Medical Complexity status as determined by the treating NICU clinician and defined as "children with multiple significant chronic health problems including multiple organ systems, which result in functional limitations, high health care needs or utilization, and often require need for, or use of, medical technology."
• Exclusion Criteria:
• • Does not have a caregiver participant who agrees to their participation in the study to complete follow-up surveys
• • Does not intend to use University of Vermont Health Network and affiliated sites for care during the one-year trial period