Advances in medical treatments enable many children to survive health threats that only a few years ago would have been fatal. The quandary is that these survivors are living with serious chronic conditions and disabilities at ever-greater costs to families and to the nation's health care system. Two new studies illustrate this predicament, showing that hospitalizations of pediatric patients with complex chronic conditions account for an increasing proportion of inpatient care and resource use, with the relative medical complexity of these patients increasing over the 15-year period ending in 2005.
Burns and colleagues examined discharge data from the Nationwide Inpatient Sample, a database created by the Agency for Healthcare Research and Quality as part of the Healthcare Cost and Utilization Project (HCUP). Data on children eight days to four years old were analyzed in contiguous three-year periods from 1991 to 2005. Diagnoses were grouped into nine categories of complex chronic conditions: neuromuscular, cardiovascular, respiratory, renal, gastrointestinal, hematologic–immunologic, and metabolic conditions; cancer; and "other." More than 60 million hospitalizations were examined, with more than 2 million meeting the researchers' diagnostic definition of medical complexity. The researchers analyzed hospitalization rates for each diagnosis individually and in combination, as well as the hospitalization rates of children with either cerebral palsy or bronchopulmonary dysplasia alone and in combination with an additional diagnosis in another category.
All hospitalization rates among children with chronic conditions in more than one category increased an average of 17.6% each three-year period, and doubled from 83.7 per 100,000 patients in the 1991-to-1993 period to 166.3 per 100,000 patients in the 2003-to-2005 period. The largest increase was among those with a renal condition plus a diagnosis in at least one other category. Among those with a diagnosis in a single category, only the rate of hospitalizations for hematologic–immunologic conditions decreased; hospitalization rates for cancer, neuromuscular, and gastrointestinal diagnoses remained stable. Hospitalizations for all other chronic conditions increased significantly. Although hospitalizations for cerebral palsy alone decreased slightly, those for bronchopulmonary dysplasia alone and either condition with complex comorbidities increased significantly.
In another retrospective study, Simon and colleagues analyzed pediatric hospitalization data from the Kids Inpatient Databases (also an HCUP initiative) to determine whether hospitalized children really are becoming more medically complex, as many clinicians have thought. Data from 1997, 2000, 2003, and 2006 were analyzed. The 2006 data set included almost 7 million hospital admissions to more than 3,700 hospitals in 38 states. All hospitalizations of children from birth to 18 years of age were analyzed.
From 1997 to 2006 the proportion of admissions, lengths of stay, and charges increased in all diagnostic categories except hematologic conditions. The proportion of admissions attributable to complex chronic conditions increased from 8.9% of all pediatric admissions in 1997 to 10.1% in 2006.
"This article speaks most to hospital nurses," said lead author Tamara D. Simon in an e-mail. "Complex chronic conditions are being seen more in older children; those with public insurance; and [those] in urban, teaching, and children's (tertiary care) hospitals. Finally, complex chronic conditions are also associated with placement of technology-dependent devices" such as tracheostomy tubes and ventriculoperitoneal shunts.
In an accompanying commentary, Robert T. Burke and Brian Alverson of Brown University's Warren Alpert School of Medicine wrote that the two studies "have provided a clarion call to the pediatric health care community that will require pediatric care providers, health care policymakers and payers, patients, and families to work cooperatively to develop systems of high-quality, cost-efficient, comprehensive, coordinated, and patient- and family-centered inpatient and outpatient care for this growing population." This approach has implications for nurses in hospital, home health, and school settings. Martha Dewey Bergren, director of research at the National Association of School Nurses, said, "Schools are a hidden health care system. Nine percent to 25% of students in schools have chronic conditions or disabilities. School nurses need to support these children and their families and make sure that policymakers understand how many medically complex kids go to school every day."
Agatha M. Gallo, a professor at the University of Illinois at Chicago College of Nursing, said the studies provide an opportunity to highlight the crucial role that nurses have always played in chronic care. "Hospitalizations are very disruptive for children and their families," she said. "The child's education is disrupted. We sometimes forget chronic illness affects not only the sick child and the mother, but siblings and the extended family. Not only are nurses concerned about the physical and psychosocial needs of the child but also how the family and family members are affected and involved in care. In other words, nurses are keeping families healthy, too."—James M. Stubenrauch