Understanding Primary Care Providers’ Information Gathering Strategies in the Care of Children and Youth with Special Health Care Needs

Background: Effective care coordination of children and youth with special health care needs (CYSHCN) is critical but challenging. Objective: To investigate clinicians’ information-gathering strategies while preparing for visits with CYSHCN. Methods: Critical incident interviews with primary care physicians and care coordinators. Results: Six themes emerged indicating 1) substantial reliance on the electronic health record; 2) a central role of the problem list in organizing and summarizing information; 3) Medical Home’s central role in organizing clinical documentation; 4) universal need to integrate information from external records; 5) lack of well-organized and labeled encounter documentation; and 6) lack of tools reconcile medication lists. Conclusion: Our findings have important implications to the design of informatics tools to support information-gathering in the care of CYSHCN