OBJECTIVE: In this study we used national data to determine changes in the prevalence of hospital admissions for medically complex children over a 15-year period. PATIENTS AND METHODS: Data from the Nationwide Inpatient Sample, a component of the Healthcare Cost and Utilization Project, was analyzed in 3-year increments from 1991 to 2005 to determine national trends in rates of hospitalization of children aged 8 days to 4 years with chronic conditions. Discharge diagnoses from the Nationwide Inpatient Sample were grouped into 9 categories of complex chronic conditions (CCCs). Hospitalization rates for each of the 9 CCC categories were studied both individually and in combination. Trends of children hospitalized with 2 specific disorders, cerebral palsy (CP) and bronchopulmonary dysplasia, with additional diagnoses in more than 1 CCC category were also examined. RESULTS: Hospitalization rates of children with diagnoses in more than 1 CCC category increased from 83.7 per 100 000 (1991–1993) to 166 per 100 000 (2003–2005) (P[r] < .001). The hospitalization rate of children with CP plus more than 1 CCC diagnosis increased from 7.1 to 10.4 per 100 000 (P = .002), whereas the hospitalization rates of children with bronchopulmonary dysplasia plus more than 1 CCC diagnosis increased from 9.8 to 23.9 per 100 000 (P < .001). CONCLUSIONS: Consistent increases in hospitalization rates were noted among children with diagnoses in multiple CCC categories, whereas hospitalization rates of children with CP alone have remained stable. The relative medical complexity of hospitalized pediatric patients has increased over the past 15 years.

Trisomy 18 and trisomy 13 are associated with serious and/or fatal birth defects, with death frequently occurring in the first month of life. Previous studies are limited by small samples and are dated. This study characterized the comorbid birth defects associated with trisomy 18 and trisomy 13 among US liveborn infants using the Healthcare Cost and Utilization Project's Kids' Inpatient Database and Nationwide Inpatient Sample, two large, current and nationally representative databases. The occurrence of 39 commonly reported comorbid birth defects among infants with trisomies 18 and 13 was compared to the occurrence of malformations among newborns without trisomies. The prevalences of trisomy 18 and 13 were 1.29/10,000 and 0.85/10,000 live births, respectively. Among infants with trisomy 18, 61% were female, 45.4% with heart defects. Among those with trisomy 13, 53% were female, 38.4% had heart defects, 24.5% had orofacial anomalies, and 11.2% had central nervous system abnormalities. More than half of the newborns with both conditions died prior to discharge. This updated information can be used to inform clinical decision‐making and may help providers better prepare families for infants with trisomies. © 2006 Wiley‐Liss, Inc.

The objective of this study is to examine the association of family-centered care (FCC) with specific health care service outcomes for children with special health care needs (CSHCN). The study is a secondary analysis of the 2005-2006 National Survey of Children with Special Health Care Needs. Receipt of FCC was determined by five questions regarding how well health care providers addressed family concerns in the prior 12 months. We measured family burden by reports of delayed health care, unmet need, financial costs, and time devoted to care; health status, by stability of health care needs; and emergency department and outpatient service use. All statistical analyses used propensity score-based matching models to address selection bias. FCC was reported by 65.6% of respondents (N = 38,915). FCC was associated with less delayed health care (AOR: 0.56; 95% CI: 0.48, 0.66), fewer unmet service needs (AOR: 0.53; 95% CI: 0.47, 0.60), reduced odds of ≥1 h/week coordinating care (AOR: 0.83; 95% CI: 0.74, 0.93) and reductions in out of pocket costs (AOR: 0.88; 95% CI: 0.80, 0.96). FCC was associated with more stable health care needs (AOR: 1.11; 95% CI: 1.01, 1.21), reduced odds of emergency room visits (AOR: 0.90; 95% CI: 0.82, 0.99) and increased odds of doctor visits (AOR: 1.25; 95% CI: 1.14, 1.37). Our study demonstrates associations of positive health and family outcomes with FCC. Realizing the health care delivery benefits of FCC may require additional encounters to build key elements of trust and partnership.