A Practical Care Coordination Tool for Children with Medical Complexity: Development, Stakeholder Evaluation, and a Proposal for Pilot Implementation

Children with complex medical care needs require extensive resources. Their families face significant challenges in coordinating care, managing insurance, and integrating various care plans, especially in areas without pediatric palliative care or complex care clinics. To address this gap, we developed a family-centered care coordination tool and evaluated stakeholder perceptions of its content and usability prior to electronic implementation. The tool was informed by a targeted literature review and iterative feedback from caregivers, primary care providers, and nurse coordinators. Stakeholders reviewed prototype templates and completed surveys with quantitative and qualitative items, analyzed using descriptive statistics and rapid thematic analysis. Caregivers and providers endorsed the tool's usefulness and anticipated benefits for care coordination. Key priorities included problem lists, medication details with doses, care-team contacts, and ease of updating. Feedback led to expanded medication and goal sections. Overall, stakeholders supported the tool's design and proposed electronic integration. A prospective pilot is planned to create an electronic prototype of the mobile application to assess usability, caregiver burden, and early clinical outcomes following implementation.