Children With Medical Complexity

Children with chronic and complex medical conditions require intense care management from multiple medical and community providers. Examples include genetic diagnoses, feeding difficulties and developmental delays; they often rely on technology such as feeding tubes or tracheostomies. While these children comprise only 6 percent of the Medicaid population, they represent 40 percent of the Medicaid spend for children. This totals approximately $380 million in annual care costs. For pediatric academic medical centers, these children may represent up to 80 percent of the total hospital days.

Overall they’re a relatively small patient population, but children with medical complexity (CMC) are a fast-growing subpopulation of children. They are seriously ill. Each child's condition is unique, leading to highly variable care needs that create high risk and high cost in health care delivery. Fragmented care results in frequent emergency department (ED) visits that often end in hospitalizations, making it critical to improve care coordination for these children and reduce stress for their families.

The CARE Award involved more than 8,000 CMC, which makes it the largest study done on CMC. A single complex care program may serve a very small population, approximately 400-1500 CMC, so bringing together patients from 10 children’s hospitals created an opportunity to broadly implement change concepts and demonstrate improvement with a larger population, which makes the project data statistically significant.

About the CARE Award Enrollees

To support patient enrollment and project design, participating hospital teams agreed to utilize the 3M Clinical Risk Group (CRG) categories 5b-9. General characteristics of these children include: chronic and severe health conditions, significant health service needs, functional limitations, technological supports and high resource utilization.

Many CARE Award hospitals selected a higher acuity of patients. Twenty-six percent of the enrolled CMC had the highest amount of medical complexity (CRG 9: Catastrophic) among CMC, compared to only 5 percent of CMC nationwide. The top three highest spend categories for these patients are inpatient days at 30 percent, home health at 20 percent and pharmacy at 18 percent. ED discharges make up another 2 percent.

3M Clinical Risk Group (CRG) Categories

Non-Chronic (CRGs 1, 2) Episodic Chronic (CRGs 3, 4) Lifelong Chronic (CRG 5) Complex Chronic (CRGs 6, 7, 9) Malignancies (CRG 8)
Brief Description Acute conditions that will not last one year Chronic conditions that will last one year and are likely to be episodic in manifestation

Potentially curable with adequate treatment

Not likely to last into adulthood
More severe primary condition in one body system that is more likely to cause significant long-lasting health impairment Significant chronic condition in two or more body systems


Progressive or life limiting chronic conditions


Conditions requiring a dependency on technology
Malignancies requiring active treatment
Example Conditions Fracture, pneumonia, appendicitis, trauma Asthma, depression, conduct disorders Type 1 diabetes, congenital heart disease A child with diabetes, encephalopathy and chronic pulmonary disease.
Down syndrome, cerebral palsy, cystic fibrosis
Leukemia, bone tumors, brain tumors

*Category 5 is further broken into two subcategories by the Children’s Hospital Association - 5a and 5b. The definition of medically complex children includes 5b - Single Dominant Chronic Disease, such as those with Sickle Cell Disease or Congenital Heart Disease

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Lessons Learned

Insights to Support Care Transformation

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CARE Award Patient Acuity and Selection Effects

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Health Care Spend for Children with Significant Chronic Diseases

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Primary Drivers of Cost for a Specific Population

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Care Spending for a Highly Complex Population

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