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Children with medical complexity account for about 40 percent of pediatric Medicaid spending, yet comprise only 3 percent of the pediatric population.  

Clinical programs for this population of children are growing rapidly, but there is no consensus on which health outcomes should be measured to meet the triple aim of improving the patient experience of care, reducing the cost of health care, and improving the health of populations.

CMC have serious and complex chronic illnesses that result in very different health trajectories from other children. This diversity of conditions, and their variable severity, means that it has not been possible to reliably describe the overall health of this population. A Foundation grant to UCLA provided funding for a project that sought to identify a set of health domains that could be used to guide measurement of the health of this heterogenous group of children. 

The project began with an extensive review of published literature. Then, a national snowball sample of complex care caregivers, advocates, providers, researchers, and policy and health system experts participated in a group concept mapping process. Cluster mapping of these concepts identified 10 health outcome domains: (1) basic needs, (2) inclusive education, (3) child social integration, (4) current child health-related quality of life, (5) long-term child and family self-sufficiency, (6) family social integration, (7) community system supports, (8) health care system supports, (9) a high-quality patient-centered medical home, and (10) family-centered care. 

Identification of these domains provides the basis for work to develop measures for each of them. The knowledge generated by this project should help guide the development of future programs and policies affecting children with chronic and complex special needs.

See related article: Experts’ Perspectives toward a Population Health Approach for Children with Medical Complexity