Researchers find biggest increase in patients with special needs, such as cerebral palsy
An in-depth profile of many U.S. children’s hospitals suggests that children with complex chronic diseases such as cerebral palsy are taking up an increasingly larger share of hospital resources.
The finding raises concerns about how well freestanding pediatric hospitals can handle a rapidly growing group of patients that are, by definition, difficult and expensive to care for.
“Children with medical complexity are often relying on a myriad of services to get their health care needs met,” said study lead author Dr. Jay Berry, an assistant professor of pediatrics with Boston Children’s Hospital and Harvard Medical School in Boston. “These services include primary and specialty care, home nursing and case management.”
Most children seen in hospitals are healthy overall, but require treatment for an acute sickness, such as pneumonia, the authors stressed. But a minority of children suffer from lifelong chronic sickness, such as those born with heart disease; neurological diseases such as cerebral palsy, which impairs muscle tone and movement; or Down syndrome, a chromosomal disorder that affects the nervous system and may include heart, hearing and skeletal problems.
It’s not unusual for children with complex conditions to see 10 to 15 different care providers throughout the year, Berry said. “They tend to have a lot of appointments,” he added.
Two main factors are driving up hospital use by children with medically complex conditions, he noted. “One, survival for these children has improved. They are living longer, but at the expense of developing secondary co-morbid conditions that often require hospital care for treatment,” he said.
“Two, care coordination for these children is inadequate,” he added. “With better care coordination and proactive care planning, we believe that the children would be healthier and not need to come into the hospital so often.”
Berry and his colleagues discussed their findings in the Dec. 24 online issue of the journal Archives of Pediatrics & Adolescent Medicine.
To assess trends in admissions at children’s hospitals, Berry’s team studied data for more than 1.5 million pediatric patients hospitalized at least once at one of 28 urban pediatric hospitals between 2004 and 2009.
All the hospitals provide patient information to the Pediatric Health Information System, which represents about half of the nation’s freestanding children’s hospitals. Patients of all ages were included, given that many kids over age 18 continue receiving care at children’s hospitals as they age.
Although there was a significant increase in pediatric hospitalizations during the study time frame, hospitals saw a bigger rise in the admissions of chronically sick children (up by more than 19 percent) compared with those who did not have a chronic condition (up by less than 14 percent).
The biggest increase (nearly 33 percent) was seen among children diagnosed with a severe chronic illness that affected at least two body systems. The most common combination of conditions was cerebral palsy and asthma. By 2009 this group of children constituted more than 19 percent of all the hospitalized patients, and contributed to more than 50 percent ($9.2 billion) of hospital charges, the study found.
Based on the findings, Berry suggested that children’s hospitals need to proactively prepare financially and organizationally for the long-term likelihood that their patient pool will become increasingly sicker as a whole, and thereby more difficult and costly to treat.
In an accompanying editorial, Dr. Steven Altschuler, chief executive officer of the Children’s Hospital of Philadelphia, said that although many factors contribute to the overall trend, the bottom-line conclusion is not surprising.
“Most pediatric programs in smaller community hospitals do not have the resources or expertise to care for these chronically ill children with multiple problems,” he said. The large pediatric hospitals are able to integrate care involving multiple physicians across different specialties, “so these findings are not unexpected.”
SOURCES: Jay Berry, M.D., M.P.H., assistant professor, pediatrics, division of general pediatrics, Boston Children’s Hospital, Harvard Medical School, Boston; Steven Altschuler, M.D, CEO, Children’s Hospital of Philadelphia; Dec. 24, 2012, Archives of Pediatrics & Adolescent Medicine,