Implementing a Digital Care Pathway to Support Children Under 18 With Tracheostomy and Their Families

What this Trial Is About

This research aims to develop and evaluate a standardized clinical pathway called DECIDE-T for children with medical complexity who require a tracheostomy, with or without long-term ventilation. These children represent a small group but account for more than half of pediatric patients hospitalized for extended periods in Alberta. The project seeks to reduce hospital stays and associated costs while also addressing mental distress and burnout among caregivers and families. The DECIDE-T pathway includes a hospital-to-home directive supported by various digital health tools. These tools consist of a Connect Care pathway, educational modules, high-fidelity simulations for family and caregiver training, an online parental resource center, peer support within hospital and community settings, and a telehealth follow-up program after discharge. The study compares outcomes before and after implementing this pathway. Participants will be children under 18 years undergoing their first tracheostomy procedure. Researchers will monitor hospital and ICU length of stay, ICU readmission, mortality, decannulation, tracheostomy duration, adverse events, hospital costs, and readmissions over 12 months. They will also assess caregivers mental stress. The study runs from September 2024 to December 2027, aiming to improve care efficiency and support for these families.

Digital Health Pathway for Children With Medical Complexity Requiring Tracheostomy