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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 health care providers and, for some, the nation’s children’s hospitals are the only place their children can receive specialty care. As health care reform policy debates continue in our country, delivering higher-quality care coordination and improving the quality of life for families of children with complex chronic conditions will be a paramount goal. We must also be attentive to the fact that health insurance reform could introduce potential challenges for families, many of whom are already facing steep out-of-pocket costs for care and limited and timely access to appropriate providers.

Compounding the barriers families experience to receiving adequate, affordable health care is the fact that health care systems are facing growing challenges around capacity management, patient access and patient engagement. For families, this has led to longer wait times for appointments, less individual time with providers, and the difficult task of coordinating multiple appointments and follow-up recommendations among various specialists for children with complex medical conditions.


Next Steps

Standardizing the work of clinical care teams with quality improvement methods and integrated EHR tools can provide a scalable strategy for health systems to address issues of capacity management, patient access and patient engagement. By providing leadership in the development of new population approaches to care coordination for children, the Population Health Innovation team works to provide a templated design, implementation, and evaluation process for other clinical care teams at CHOP that seek similar ventures to improve population management through improved patient access and engagement. Increasingly, these programs are creating stronger relationships with community service agencies that can assist people outside of the hospital setting, too. These broader initiatives will be the focus of implementation and evaluation studies in the years to come.

This project page was last updated in December 2019.

Suggested Citation

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].