Identifying Priorities to Improve the System of Care for Children With Complex Health Needs in North Carolina: Process and Outcomes of Systematic Stakeholder Engagement

Objective: Children with complex health needs (CCHN) have both medical (eg, chronic conditions) and health-related social needs (eg, potentially adverse social determinants of health) that require ongoing health care and support from multiple community service providers. National standards developed for populations defined by health needs (CYSHCN) provide a framework for stakeholders to plan system-level improvements in care delivery for CCHN, but improvement efforts should reflect the priorities of their families and providers. This article describes a process of prioritizing system-level efforts to improve the health and well-being of CCHN and families in North Carolina (NC), using systematic stakeholder engagement and modified Delphi expert ratings.

Methods: We surveyed stakeholders with experience caring for CCHN using an open-ended, 3-item instrument to identify opportunities to improve systems of care. Using directed qualitative content analysis, we synthesized responses into a master list of potential improvement topics. Using a modified Delphi approach, a 16-member advisory committee rated all topics for importance and urgency, on 9-point Likert scales over 2 rounds; then ratings for each topic were ranked (low, medium, high) to establish relative priority.

Results: Forty seven individuals from 31 counties around NC provided survey responses, yielding 59 improvement topics in 10 domains. Through the modified Delphi method process, 21 topics (36%) received the highest rankings, largely representing access to community- and home-based services, equity, and enhancement of the pediatric workforce.

Conclusions: Priorities identified by stakeholders will inform advocacy, policy, and improvement efforts. Next steps for the coalition include developing improvement projects to implement stakeholder-recommended actions for the highest-priority topics.