Education Program for Family Caregivers of Children With Medical Complexity in the Transition to Home

OBJECTIVES To evaluate the association among a family caregiver educational program, the Connected Care Program (CCP), and emergency department (ED) visit rates, health care use, and medical technology–related complications postdischarge among children with medical complexity (CMC) who initiated medical technology in the hospital and continued at home. METHODS A 6-month, prospective, observational pilot efficacy study was conducted from February 2020 to August 2022 at 2 tertiary children’s hospitals. ED visit rates among CMC discharged home with new medical technology were compared between those who received the CCP and those at another hospital without a standardized program. A total of 158 participants were enrolled in the intervention hospital and 61 participants in the control hospital. The primary outcome was ED visit rates, and secondary outcomes were health care use and medical technology complications over 6 months postdischarge. Negative binomial regression assessed the association between the CCP exposure and outcomes. RESULTS Of 219 enrolled participants, 141 completed the study. The median age was 11.0 months (IQR, 4.0–52.0) and 58% were male. Common technologies initiated included enteral (72%, n = 158), respiratory (16%, n = 36), and vascular access (11%, n = 25). No significant differences were observed between groups regarding ED visits and hospitalizations. Participants exposed to the CCP observed 39% fewer medical technology-related complications (incident rate ratio, 0.61; 95% CI, 0.42–0.88; P = .009). CONCLUSIONS The CCP was not significantly associated with health care use. However, it was associated with fewer technology-related complications. These findings suggest further research should explore long-term outcomes and refine the program to better support the care of CMC transitioning home on medical technology.