Meeting the Needs of Children with Complex Medical Needs in a Changing Health Care System

Statement of Problem

Children with complex chronic conditions like congenital heart diseases, congenital anomalies, cystic fibrosis, and cancer represent about 7% of all children, but are responsible for 40% of all pediatric costs.  These children and their families often navigate multiple health care providers and are consistently at high-risk for emergency department visits and hospitalizations.  Many families have very limited options for healthcare providers, and for some, the nation’s children’s hospitals are their sole source providers.  As the nation embraces healthcare reform, delivering higher quality of care coordination and improving the quality of life for families of children with complex chronic conditions will be a paramount goal.  Health insurance reform will also introduce potential challenges for families, many of whom were already facing steep out-of-pocket costs for care and limited and timely access to appropriate providers.


The PolicyLab team is working with Children’s Hospital of Philadelphia to develop new programs of customized care coordination for families of children with complex medical conditions who are at greatest risk for recurrent hospitalizations and emergency department visits.  The intent of this program is to unite regional payers and the children’s hospital in new contractual models where both partners share the risk in delivering higher quality of care to these children, and in which both partners jointly seek to improve the depth of care coordination that families receive.  As this new program emerges, the team will seek to evaluate the potential for increased quality, improved family satisfaction, and reduced cost.  At the same, our legal and policy team will evaluate emerging trends in these partnerships and other trends in health insurance practice that might have significant implications for the care of these families and their relationship to their healthcare providers.

Next Steps

By providing leadership in the development of new population approaches to care coordination for these children, the team hopes to provide a templated experience for other systems that might seek similar ventures.  Evaluating the impact of health insurance reforms on these programs, and on the relationship between families and providers will insure that health insurance reforms don’t inadvertently harm these high-risk children and their families.

This project page was last updated in July 2019.

Suggested Citation

The Children's Hospital of Philadelphia, PolicyLab. Meeting the Needs of Children with Complex Medical Needs in a Changing Health Care System [Online]. Available at: [Accessed: plug in date accessed here].