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Report calls for doctors, payers, policymakers to meet needs of the medically complex :

November 21, 2016

Your next patient is a 4-month-old who has just had a repair of a ventricular septal defect and is developing craniosynostosis. He feeds slowly by mouth and is underweight. As a result, he has a gastrostomy tube for nutrition and was placed on a special formula because of excessive crying and vomiting on the original cow’s milk-based formula. He is not yet smiling and has just begun to lift his head. His parents are separated and his mother, who is the primary caregiver, has no car. As you review his hospital discharge summary, you realize that your patient was placed in a 15-minute follow-up slot.

The new AAP clinical report Recognition and Management of Medical Complexity calls for pediatricians, payers and policymakers to recognize children with medical complexity as a distinct group who benefit from specific office-based payment and policy initiatives. Available at, the report from the AAP Council on Children with Disabilities will be published in the December issue of Pediatrics.

Medical complexity refers to the presence of multiple chronic conditions that often lead to some form of medical technology such as a feeding tube to maintain the health of the child. The cause of the medical complexity can vary from an underlying genetic issue to extreme prematurity to a significant chronic illness that develops later in life.

Significant challenges

Regardless of etiology, these children share many characteristics, including a high prevalence of developmental delay and a significant risk of poor growth and feeding difficulties. The impact of medical complexity on families is substantial, with a high risk of financial difficulties and typically many hours needed to coordinate appointments and provide home care. Children with medical complexity may visit the emergency department often and are at risk for prolonged and recurrent hospitalizations.

They also account for a disproportionate amount of health care spending. Approximately 1% of children, most of whom have medical complexity, account for up to one-third of health care spending in pediatrics in a given year.

Care coordination, support

Caring for the child with medical complexity requires a family-centered approach that coordinates strong primary care, access to multiple subspecialists and an array of community- and school-based services. Often care is fragmented, and the child can “fall through the cracks,” particularly when it seems that no one is in charge of overall management. Families report a very high level of unmet health care service needs. Many pediatricians say they lack sufficient time and support to care adequately for children with medical complexity.

The clinical report calls for all of these children to have a medical home and for pediatricians to recognize children with medical complexity and utilize tools and practice transformation concepts that help with care.

Such concepts include team-based case, care planning, care coordination and a patient registry. Pediatricians in the primary care setting may choose to formally collaborate with specialists and tertiary care centers, including complex care services that provide dedicated services to the patients. At all times, the child with medical complexity should have a clearly defined “go-to” provider who oversees comprehensive care and is able to coordinate medical and community-based services for the child and family.

Children with medical complexity should be recognized as a distinct population for policy, research and payment reform agendas, according to the clinical report. Under a fee-for-service payment system, adequate support for services needed include payments for non-face-to-face encounters such as telephone and case management. As payers increasingly adopt value-based payment strategies, risk adjustment and appropriate capitation and care management fees become increasingly important to support care. Payment reform that aims to bend the cost curve through population health strategies often focuses on reducing preventable hospitalizations. A significant proportion of costs for these children are in the inpatient setting. Thus, pediatricians may want to focus on them as a strategy to reduce overall costs for their practices and health care systems.

Continued advances in medical knowledge and technology likely will result in an increasing number of children with medical complexity in the community and hospital settings. Recognition, collaboration, family-centered care and a team-based approach are essential to care. Value-based payments, complex care services and community-based care coordinators are some of the resources and tools that are increasingly available to help the pediatrician care for child with medical complexity.

The support helps enable all children, especially those with complex conditions, to have a medical home and receive the care they need when they need it.

Dr. Kuo, a lead author of the clinical report, is a member of the AAP Council on Children with Disabilities Executive Committee.

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