Care Coordination for Children and Youth With Special Health Care Needs: A Descriptive, Multisite Study of Activities, Personnel Costs, and Outcomes

Objectives included testing use of the care-coordination measurement tool in pediatric primary care practices; describing care-coordination activities for children and youth that occur in primary care practices; assessing the relationship of care-coordination activities in the medical home with outcomes related to resource use; and measuring the direct personnel costs of care-coordination activities. Six general pediatric practices were selected, representing a diverse range of sizes, locations, patient demographics, and care-coordination activity model types. The care-coordination measurement tool was used over a period of 8 months in 2003 to record all of the nonreimbursable care-coordination activity encounters performed by any office-based personnel. The tool enabled recording of activities, resources-use outcomes, and time. Cost of personnel performing care-coordination activities was derived by extrapolation from the time spent. Care-coordination activity services were used by patients of all complexity levels. Children and youth with special health care needs with acute-onset, family-based psychosocial problems experienced 14% of the care-coordination activity encounters and used 21% of the care-coordination activities minutes. Children and youth without special health care needs, without complicating family psychosocial problems, received 50% of the encounters and used 36% of the care-coordination activity minutes. The average cost per care-coordination activity encounter varied from $4.39 to $12.86, with an overall mean of $7.78. A principal cost driver seemed to be the percentage of care-coordination activities performed by physicians. Office-based nurses prevented a large majority of emergency department visits and episodic office visits. Care-coordination activity was assessed at the practice level, and the care-coordination measurement tool was used successfully during the operations of typical, pediatric, primary care settings. The presence of acute, family-based social stressors was a significant driver of need for care-coordination activities. A high proportion of dependence on care-coordination performed by physicians led to increased costs. Office-based nurses providing care coordination were responsible for a significant number of episodes of avoidance of higher cost use outcomes.