Enhanced Primary Care Using Telehealth for Children With Complex Medical Needs

What this Trial Is About

Researchers are evaluating how telehealth can support pediatric primary care providers PCPs in treating, monitoring, and managing children with medical complexity CMC. These children have rare diseases affecting multiple organs and require care from many specialists. The study aims to see if telehealth improves care coordination, reduces the burden on caregivers and children, and enhances appointment and health outcomes compared to usual care. The study compares Enhanced Primary Care via Telehealth E-PRIME with usual care. Usual care involves interdisciplinary complex care teams coordinating appointments and communication among specialists. The E-PRIME intervention includes helping families use patient portals and video visits, sharing clinical summaries with PCPs, and providing telehealth support to PCPs. Participants receive usual care initially or start with E-PRIME at enrollment. Participants will be monitored for outcomes such as the number of days children spend outside the home, hospitalizations, emergency room visits, hospital days, appointment completion, caregiver burden, and satisfaction with care coordination. Assessments occur over about 19 months. The study involves collecting data on child health, caregiver experiences, and care coordination to evaluate the impact of telehealth support.

E-PRIME For Children With Medical Complexity