A recent national study has found that hospital care for children with complex chronic conditions (CCCs) has grown significantly more intensive over the last two decades, and is now mainly provided at urban teaching children’s hospitals. The research, which analyzed U.S. hospital discharge data from 2000 to 2022, shows a substantial shift in where and how pediatric inpatient care is delivered.
The study revealed that children with at least one CCC now account for more than 40 percent of pediatric bed days and nearly 60 percent of hospital charges, despite making up a small portion of the total pediatric population. Conditions included in this group are cerebral palsy, congenital heart defects, and genetic disorders. These patients often require longer hospital stays, have multiple co-occurring conditions, and rely on medical technologies such as feeding or breathing tubes.
Lead author Nathaniel Bayer, MD, associate professor at the University of Rochester’s Golisano Children’s Hospital, said: “Over the last 20 years, the inpatient pediatric caseload has shifted, the children we see in the hospital are far more complex, and almost all children with complex conditions seek care in specialty children’s hospitals. That concentration of very sick children has real implications for where care happens, who delivers it, and how it is paid for.”
The research was conducted by a team from several institutions including the University of Rochester, Boston Children’s Hospital, Johns Hopkins University, University of Vermont, Children’s Mercy Hospital in Kansas City, University of Toronto, and the Children’s Hospital Association. Jay Berry, MD MPH from Boston Children’s Hospital and Harvard University served as senior author.
Data showed that between 2000 and 2022:
– The rate of discharges for children with at least one CCC increased by over 24 percent.
– Discharge rates for children without CCCs dropped by more than nine percent.
– Although they made up just 22 percent of all discharges in 2022, patients with CCCs accounted for about two-fifths of bed days and almost three-fifths of charges.
– The number of patients with two CCC diagnoses rose by 60 percent; those with three or more grew by 340 percent.
“What jumped out was the rise in hospital resource use by children with multiple interacting chronic conditions. These are kids who require highly coordinated intensive inpatient care,” Bayer stated.
Most admissions involving medically complex patients are covered by Medicaid. The authors note that reimbursement rates often do not match actual costs incurred by hospitals caring for these patients. According to Bayer: “Children’s hospitals are providing the majority of this care but payment rates aren’t keeping up. That mismatch contributes to closures of pediatric units in community and rural hospitals and centralizes care in academic centers with unsustainable financial models.”
The report also notes challenges related to staffing and training: “Residency and fellowship programs need to adapt so future pediatricians and subspecialists are prepared to care for these medically complex children. The inpatient experience is changing—residents may care for sicker more complex patients—and training must address that reality.”
The paper recommends several responses including evaluation of team structures within hospitals to support safe coordinated care; updates to clinical training curricula; and changes to Medicaid policy reflecting higher needs among medically complex pediatric populations.
Bayer added: “We need pediatric-specific Medicaid policies and payment structures that recognize these children aren’t the same as the average adult Medicaid population. If we want to sustain high-quality pediatric inpatient care reimbursement and workforce investments have to follow from the public and private payers.”
