• Report
  • June 25, 2013

The Landscape of Medical Care for Children with Medical Complexity

This special report looks at a growing sub-population among children -- the medically complex -- and reveals the extent and cost of their health services utilization. It also examines where there are gaps in how the care is managed, and identifies opportunities for improvement. This report is supported by the Children's Hospital Association.


  • Jay G. Berry, MD, MPH, Boston Children’s Hospital, Harvard Medical School, Boston, MA
  • Rishi K. Agrawal, MD, MPH, Ann & Robert H. Lurie Children’s Hospital of Chicago, Northwestern University School of Medicine, Chicago, IL
  • Eyal Cohen, MD, MSc,  The Hospital for Sick Children, University of Toronto, Toronto, ON, Canada
  • Dennis Z. Kuo, MD, MHS, Arkansas Children’s Hospital, University of Arkansas for Medical Sciences, Little Rock, AR


Children with medical complexity (CMC) are an important group of children who have multifaceted clinical and functional needs that can be challenging to manage and treat in the current health care system.

Although there is no standard definition of medical complexity, four cardinal domains characterize CMC:

  1. Chronic, severe health conditions
  2. Substantial health service needs
  3. Major functional limitations
  4. High health resource utilization.
CMC likely represent less than 1% of all children, yet they account for over one-third of pediatric health care costs. Inpatient care is responsible for as much as 80% of health care cost for CMC and use of the hospital is increasing for CMC over time. It is hypothesized that some inpatient utilization for CMC could be avoided with better ambulatory care.

Care for many CMC is currently fragmented, uncoordinated, and crisis-driven with a tendency to overmedicalize the child and to under-support the child’s family caregivers. Several single-centered, quality improvement studies of outpatient care for CMC report a reduction in inpatient utilization. However, most of these studies have designs that can neither determine causality nor quantify the true amount of cost savings attributable to improved quality of care.

Although best practices have not been identified, the ideal model of care for CMC is suspected to be one that:
  1. Provides urgent care in the outpatient setting to treat acute health problems
  2. Contains at least one outpatient provider who comprehensively addresses acute and chronic medical, functional and psychosocial needs
  3. Coordinates decision making among all participating health care providers
  4. Develops effective, proactive plans of care to maximize the child’s well-being and proactively anticipates health problems that are likely to occur
Because much of this type of care is not necessarily delivered during face-to-face health care encounters with CMC, it is poorly reimbursed in most fee-for-service payment models.

Health system redesign is necessary to improve the ecology of care for CMC and their families.

Association Contact: Aimee Ossman, (202) 753-5333