Estimated Nonreimbursed Costs for Care Coordination for Children With Medical Complexity

We read with interest the study by Ronis et al1 and the accompanying commentary by Coller and Ehlenbach2 in the January Pediatrics. We welcome efforts to measure care coordination (CC) for children with complex needs (CCN). However, we are concerned about unintended consequences if these findings are applied to broader populations and we feel compelled to note shortcomings of CC measurement in this report.

First, the patients served by this initiative comprise the fewer than 1% who are touched by specialized programs. In fact, up to 6% of children are CCN and would benefit from CC.3 We agree with Ronis et al that true costs to meet the needs of highly complex children may well be higher, but they also may be lower for less complex children. We are concerned that those planning and paying for larger-scale CC efforts may find these resource estimates prohibitive. We also disagree with the suggestion by Coller and Ehlenbach that a complex care program might be a good solution for CCN because of efficiencies of scale. Experience suggests that while specialized programs can provide services not available elsewhere, even the largest (currently 3000-5000 patients at a few institutions) can directly serve only a small fraction of the millions of CCN nationwide, or even the 1% of children with highly complex needs.

A flexible solution is needed to meet the CC needs of these children in their varied care settings, including their medical home (MH), using an integrated care approach4 by which CC activities done by complex care and MH providers are deliberately aligned and outcomes are measured5. In this model, the complex care team could serve as a “CC support”, where care coordinators based in the MH might receive support from those based in these specialized programs to enable quality CC across the population of CCN. This approach aligns with value-based, integrated care, and has the opportunity of meaningful support from both commercial and public payers if it improves outcomes.

Operationally, CC is composed of those activities which lead to the co-creation (with patient and family) and implementation of a plan of care, setting the foundation for care integration across the spectrum of care.4 CC must be distinguished from care provision, which is the process by which care for a given patient or condition is rendered. To establish the added value of CC, this distinction is essential, since current finance schemes reimburse care provision but not necessarily CC. It is unclear whether these two sets of activities are measured separately in this and other recent papers quantifying care coordination for CCN. This distinction, and tight linkages between measurement of CC structures, processes, and outcomes, are important for CC measures to gain sustainable traction in quality measure portfolios. This will help to make the case for why CC is essential for anyone with special health care needs; how CC supports measurable achievement of high value, integrated, family-centered outcomes; and how CC competencies can be developed and tracked among interprofessional teams.
 
References
1. Ronis SD, Grossberg R, Allen R, Hertz A, Kleinman LC. Estimated Nonreimbursed Costs for Care Coordination for Children With Medical Complexity. Pediatrics. 2019;143(1).
2. Coller RJ, Ehlenbach ML. Making Time to Coordinate Care for Children With Medical Complexity. Pediatrics. 2019;143(1).
3. Simon TD, Cawthon ML, Stanford S, et al. Pediatric medical complexity algorithm: a new method to stratify children by medical complexity. Pediatrics. 2014;133(6):e1647-1654.
4. AAP Council on Children with Disabilities, Medical Home Implementation Project Advisory Committee. Patient- and family-centered care coordination: a framework for integrating care for children and youth across multiple systems. Pediatrics. 2014;133(5):e1451-1460.
5. Ziniel SI, Rosenberg HN, Bach AM, Singer SJ, Antonelli RC. Validation of a Parent-Reported Experience Measure of Integrated Care. Pediatrics. 2016;138(6).