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

Area of Science:

• Pediatric healthcare
• Care coordination
• Health informatics

Background:

• Children with complex medical needs require extensive resources and face challenges in care coordination.
• Families struggle with integrating care plans, especially in underserved areas.
• Existing systems often lack adequate support for these families.

Purpose of the Study:

• To develop and evaluate a family-centered care coordination tool for children with complex medical needs.
• To assess stakeholder perceptions of the tool's content and usability before electronic implementation.
• To identify key features for effective care coordination.

Main Methods:

• A literature review and iterative feedback from caregivers, primary care providers, and nurse coordinators informed tool development.
• Stakeholders reviewed prototype templates and completed surveys.
• Quantitative and qualitative data were analyzed using descriptive statistics and thematic analysis.

Main Results:

• Caregivers and providers endorsed the tool's usefulness and anticipated benefits for care coordination.
• Key priorities identified included problem lists, medication details, care-team contacts, and ease of updating.
• Feedback led to improvements in medication and goal sections.

Conclusions:

• Stakeholders supported the developed care coordination tool's design and proposed electronic integration.
• A pilot study is planned to create an electronic prototype for assessing usability and clinical outcomes.
• The tool shows promise for improving care coordination for children with complex medical needs.