The overarching goal of care coordination is communication and co-management across settings. Children with medical complexity require care from multiple services and providers, and the many benefits of care coordination on health and patient experience outcomes have been documented. Despite these findings, parents still report their greatest challenge is communication gaps. When this occurs, parents assume responsibility for aggregating and sharing health information across providers and settings. A new primary-specialty care coordination partnership model for children with medical complexity works to address these challenges and bridge communication gaps. During the first year of the new partnership, parents participated in focus groups to better understand how they perceive communication and collaboration between the providers and services delivering care for their medically complex child. Our findings from these sessions reflect the current literature and highlight additional challenges of rural families, as seen from the perspective of the parents. We found that parents appreciate when professional care coordination is provided, but this is often the exception and not the norm. Additionally, parents feel that the local health system’s inability to care for their medically complex child results in unnecessary trips to urban-based specialty care. These gaps require a system-level approach to care coordination and, consequently, new paradigms for delivery are urgently needed.

The U Special Kids Program (USK) at the University of Minnesota provides care coordination and case management services by telephone to children with special health-care needs. We measured the effect of the USK programme on hospital resource utilization using a retrospective record review. Information on hospitalizations was collected for children enrolled in the programme for at least two years and validated for accuracy against inpatient claims data. Hospitalizations were classified as planned, unplanned or due to lack of home care. A total of 43 children enrolled in the USK programme between July 1996 and December 2006 met the study criteria. The children had multiple, complex conditions. During the period of the study, there were 61 planned hospitalizations, 184 unplanned hospitalizations and 3 hospitalizations due to lack of home care. The number of unplanned hospitalizations decreased from 74 in the first year of enrolment to 35 in the second; this reduction was significant ( P < 0.007). In the subsequent years, the rate of unplanned admissions stabilized. In contrast, the rate of planned hospitalizations was relatively constant over the five-year enrolment period. Telephone-based care coordination and case management is a promising approach for children with multiple, complex health conditions.