Surgical synergy: Assessing care coordination in pediatric surgical referral programs

Background: Specialized pediatric surgical referral programs (PSPs) for complex conditions are increasing across the United States, resulting in care rendered geographically distant from patients’ homes. We explored care coordination gaps across differing stakeholder perspectives to identify opportunities to optimize post-discharge practices in this evolving landscape. Methods: We reviewed published literature for guidelines and consensus statements on ideal care coordination practices. Qualitative interviews were conducted with three PSPs examining themes and gaps in their care coordination workflows. Surveys were distributed to an established family support network to assess patient/family perspectives on post-discharge care. To explore communication bias across practice settings, surveys were provided to American Pediatric Surgical Association (APSA) members. Results: Eight thematic domains for an ideal care coordination framework were identified. Effective PSP practices included identifying local physician contacts, providing thorough pre-discharge patient/family education, and ensuring reliable post-discharge PSP access. PSPs reported challenges in ensuring patient access to medication/devices, variability in discharge documentation, and lack of closed-loop feedback. Fifty-two family support network surveys (13 % response) revealed PSPs frequently fulfilled medication/device safety, but demonstrated gaps in medication/device receipt confirmation, insurance coverage for medications/devices, and assessment of discharge readiness. In 239 APSA responses (17 % response), local surgeons perceived bias against non-academic practice environments as a barrier to effective post-discharge PSP care coordination. Conclusion: PSPs implement care coordination practices that inconsistently address the core domains of a standardized framework. These findings provide guidance for improved alignment between PSPs, families, and local surgeons to optimize pediatric surgical post-discharge care coordination independent of geography.