Childrens hospitals see a surge in highly complex cases

Authors of a 28-hospital study call for more integrated care in the community

December 24, 2012

Boston, Mass. - A study involving 28 children’s hospitals across the country, led by Boston Children’s Hospital, finds a substantial increase over time in admissions of children with complex, chronic conditions, making the sickest children the most rapidly-growing population these hospitals care for. Findings appear in December 24Archives of Pediatrics and Adolescent Medicine.

The authors, led by Jay Berry, MD, MPH, a pediatrician with the Complex Care Service at Boston Children’s Hospital, attribute the increase to improved survival of complex patients and the difficulties they experience with care coordination and proactive care planning.

“It is challenging for pediatricians to provide high quality of care for children with medical complexity, and children’s hospitals are becoming the safety net for these patients,” says Berry. “We have to do a better job taking care of medically complicated patients inside and outside of the hospital.”

In their study, Berry and colleagues reviewed data from more than 1.5 million unique patients admitted to 28 freestanding children’s hospitals between 2004 and 2009, amounting to 2 million hospitalizations. Data came from the Pediatric Health Information System (PHIS).

During the study period, the number of new children hospitalized for a chronic condition increased by 19 percent, as compared with 14 percent for children without chronic conditions. (See graph below) 

The greatest surge in hospitalizations—an increase of 36 percent—was among children with lifelong, complex conditions affecting two or more organ systems. By 2009, these medically complex children accounted for 27 percent of all discharges from children’s hospitals, 49 percent of hospital days and 53 percent of all hospital charges (amounting to $9.2 billion).

“Many children with medical complexity rely on technology, like feeding and breathing tubes, to maintain their health,” says Berry. “They routinely see a myriad of different providers to manage their health problems, but many of their healthcare needs remain unmet. We’re concerned about how these children will be cared for if state and federal funds for their health are cut.”

Other findings of the study:

  • Children with complex conditions affecting two or more organ systems were more likely to be on Medicaid than less medically complex children (56 vs. 46 percent).
  • Cerebral palsy was their most common underlying diagnosis
  • Asthma was the most common co-morbid condition

previous study by Berry and colleagues found that children with severe neurologic impairment, who tend to have multiple other medical conditions, have come to use children’s hospitals more and community hospitals less over the past decade.

At the same time, the researchers note, the population prevalence of children with special healthcare needs has increased, as medical care has improved survival of those with the most medical complexity. “These children are not going away,” says Berry. “They are there, and they need us.”

Berry and his coauthors call for:

  • new financial strategies to provide adequate reimbursement for the inpatient needs of children with complex conditions
  • improved integration of community care so fewer hospitalizations are necessary
  • protection of federal Graduate Medical Education (GME) funding to train the next generation of pediatricians.

“We need to expand the number of clinicians able to take care of these children ,” says Berry.  “Community providers and hospitals often don’t feel able to take care of them. It can sometimes take hours to sort out their health issues and needs, which is key to keeping them healthy and out of the hospital. We need to train the next generation of pediatricians to do that well.”

“Medically complex children often need care inside and outside of hospitals and an opportunity exists to make this care integration more conducive to our patients’ needs,” said John Neff, MD, senior author on the paper and clinical director of the Center for Children with Special Needs at Seattle Children’s Hospital. “It is imperative that hospitals, healthcare providers and government agencies make care integration a vital part of their missions, and that they work together alongside families and communities to find better approaches to managing care. This will in turn help patients have the best quality of life and ensure financial resources are utilized most efficiently.”

The study was supported by a career development award from the Eunice Kennedy Shriver National Institute of Child Health and Human Development (to Berry), Seattle Children’s Hospital and the National Association of Children’s Hospitals and Related Institutions (to Neff); and a grant from the National Center for Research Resources (to coauthor Dennis Kuo, MD, MHS).

Rob Graham
Boston Children's Hospital

Kathy Porada
Seattle Children’s Hospital

Boston Children’s Hospital is home to the world’s largest research enterprise based at a pediatric medical center, where its discoveries have benefited both children and adults since 1869. More than 1,100 scientists, including nine members of the National Academy of Sciences, 11 members of the Institute of Medicine and nine members of the Howard Hughes Medical Institute comprise Boston Children’s research community. Founded as a 20-bed hospital for children, Boston Children’s today is a 395-bed comprehensive center for pediatric and adolescent health care. For more information about research and clinical innovation at Boston Children’s, visit: