Peer-reviewed article
A Practical Care Coordination Tool for Children with Medical Complexity: Development, Stakeholder Evaluation, and a Proposal for Pilot Implementation.
Salazar C, Schrader K ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001Researchers developed a care coordination tool to help families of children with complex medical needs manage their child's care, including insurance, medications, and care team contacts. The tool was designed with input from caregivers, doctors, and nurses through surveys and feedback sessions. Stakeholders found the tool useful and thought it would help coordinate care better, particularly in areas without specialized pediatric palliative care clinics. The team plans to test an electronic version of the tool to see if it reduces caregiver burden and improves outcomes.
Key points
- Families of children with complex medical conditions struggle to coordinate care across multiple providers and manage insurance
- Stakeholders prioritized problem lists, medication details with doses, care-team contact information, and ease of updating
- Caregivers and providers endorsed the tool's usefulness and anticipated it would improve care coordination
- Feedback from stakeholders led to expanded medication and goal sections in the tool design
- A prospective pilot study is planned to evaluate the electronic version's usability, impact on caregiver burden, and clinical outcomes
Limitations
The document describes stakeholder evaluation of a prototype tool but does not present data on actual implementation outcomes or effectiveness in reducing caregiver burden or improving child health outcomes. The countries where this work is situated are not specified.
Abstract
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.
Findings the Hub has extracted
Each claim below is labelled by its type of design and links back to this report.
- Intervention
- Development and stakeholder evaluation of a family-centered care coordination tool containing problem lists, medication details, care-team contacts, and updatable goal sections
- Population
- Caregivers, primary care providers, and nurse coordinators involved in the care of children with medical complexity
Key finding
Caregivers and providers endorsed the tool's usefulness for care coordination