Jay G. Berry

Children With Complex Chronic Conditions in Inpatient Hospital Settings in the United States

OBJECTIVES: Hospitalized children are perceived to be increasingly medically complex, but no such trend has been documented. The objective of this study was to determine whether the proportion of pediatric inpatient use that is attributable to patients with a diagnosis of one or more complex chronic condition (CCC) has increased over time and to assess the degree to which CCC hospitalizations are associated with attributes that are consistent with heightened medical complexity. METHODS: A retrospective observational study that used the 1997, 2000, 2003, and 2006 Kids Inpatient Databases examined US hospitalizations for children. Attributes of medical complexity included hospital admissions, length of stay, total charges, technology-assistance procedures, and mortality risk. RESULTS: The proportion of inpatient pediatric admissions, days, and charges increased from 1997 to 2006 for any CCC and for every CCC group except hematology. CCCs accounted for 8.9% of US pediatric admissions in 1997 and 10.1% of admissions in 2006. These admissions used 22.7% to 26.1% of pediatric hospital days, used 37.1% to 40.6% of pediatric hospital charges, accounted for 41.9% to 43.2% of deaths, and (for 2006) used 73% to 92% of different forms of technology-assistance procedures. As the number of CCCs for a given admission increased, all markers of use increased. CONCLUSIONS: CCC-associated hospitalizations compose an increasing proportion of inpatient care and resource use. Future research should seek to improve methods to identify the population of medically complex children, monitor their increasing inpatient use, and assess whether current systems of care are meeting their needs.

Children With Medical Complexity: An Emerging Population for Clinical and Research Initiatives

Children with medical complexity (CMC) have medical fragility and intensive care needs that are not easily met by existing health care models. CMC may have a congenital or acquired multisystem disease, a severe neurologic condition with marked functional impairment, and/or technology dependence for activities of daily living. Although these children are at risk of poor health and family outcomes, there are few well-characterized clinical initiatives and research efforts devoted to improving their care. In this article, we present a definitional framework of CMC that consists of substantial family-identified service needs, characteristic chronic and severe conditions, functional limitations, and high health care use. We explore the diversity of existing care models and apply the principles of the chronic care model to address the clinical needs of CMC. Finally, we suggest a research agenda that uses a uniform definition to accurately describe the population and to evaluate outcomes from the perspectives of the child, the family, and the broader health care system.

Hospital utilization and characteristics of patients experiencing recurrent readmissions within children's hospitals.

CONTEXT Early hospital readmission is emerging as an indicator of care quality. Some children with chronic illnesses may be readmitted on a recurrent basis, but there are limited data describing their rehospitalization patterns and impact. OBJECTIVES To describe the inpatient resource utilization, clinical characteristics, and admission reasons of patients recurrently readmitted to childrens hospitals. DESIGN, SETTING, AND PATIENTS Retrospective cohort analysis of 317,643 patients (n = 579,504 admissions) admitted to 37 US childrens hospitals in 2003 with follow-up through 2008. MAIN OUTCOME MEASURE Maximum number of readmissions experienced by each child within any 365-day interval during the 5-year follow-up period. RESULTS In the sample, 69,294 patients (21.8%) experienced at least 1 readmission within 365 days of a prior admission. Within a 365-day interval, 9237 patients (2.9%) experienced 4 or more readmissions; time between admissions was a median 37 days (interquartile range [IQR], 21-63). These patients accounted for 18.8% (109,155 admissions) of all admissions and 23.2% (

Patterns and Costs of Health Care Use of Children With Medical Complexity

3.4 billion) of total inpatient charges for the study cohort during the entire follow-up period. Tests for trend indicated that as the number of readmissions increased from 0 to 4 or more, the prevalences increased for a complex chronic condition (from 22.3% [n = 55,382/248,349] to 89.0% [n = 8225/9237]; P < .001), technology assistance (from 5.3% [n = 13,163] to 52.6% [n = 4859]; P < .001), public insurance use (from 40.9% [n = 101,575] to 56.3% [n = 5202]; P < .001), and non-Hispanic black race (from 21.8% [n = 54,140] to 34.4% [n = 3181]; P < .001); and the prevalence decreased for readmissions associated with an ambulatory care-sensitive condition (from 23.1% [62,847/272,065] to 14.0% [15,282/109,155], P < .001). Of patients readmitted 4 or more times in a 365-day interval, 2633 (28.5%) were rehospitalized for a problem in the same organ system across all admissions during the interval. CONCLUSIONS Among a group of pediatric hospitals, 18.8% of admissions and 23.2% of inpatient charges were accounted for by the 2.9% of patients with frequent recurrent admissions. Many of these patients were rehospitalized recurrently for a problem in the same organ system.

A National Profile of Caregiver Challenges Among More Medically Complex Children With Special Health Care Needs

BACKGROUND AND OBJECTIVE: Health care use of children with medical complexity (CMC), such as those with neurologic impairment or other complex chronic conditions (CCCs) and those with technology assistance (TA), is not well understood. The objective of the study was to evaluate health care utilization and costs in a population-based sample of CMC in Ontario, Canada. METHODS: Hospital discharge data from 2005 through 2007 identified CMC. Complete health system use and costs were analyzed over the subsequent 2-year period. RESULTS: The study identified 15 771 hospitalized CMC (0.67% of children in Ontario); 10 340 (65.6%) had single-organ CCC, 1063 (6.7%) multiorgan CCC, 4368 (27.6%) neurologic impairment, and 1863 (11.8%) had TA. CMC saw a median of 13 outpatient physicians and 6 distinct subspecialists. Thirty-six percent received home care services. Thirty-day readmission varied from 12.6% (single CCC without TA) to 23.7% (multiple CCC with TA). CMC accounted for almost one-third of child health spending. Rehospitalization accounted for the largest proportion of subsequent costs (27.2%), followed by home care (11.3%) and physician services (6.0%). Home care costs were a much larger proportion of costs in children with TA. Children with multiple CCC with TA had costs 3.5 times higher than children with a single CCC without TA. CONCLUSIONS: Although a small proportion of the population, CMC account for a substantial proportion of health care costs. CMC make multiple transitions across providers and care settings and CMC with TA have higher costs and home care use. Initiatives to improve their health outcomes and decrease costs need to focus on the entire continuum of care.

Inpatient Growth and Resource Use in 28 Children's Hospitals: A Longitudinal, Multi-institutional Study

OBJECTIVES To profile the national prevalence of more medically complex children with special health care needs (CSHCN) and the diversity of caregiver challenges that their families confront. DESIGN Secondary analysis of the 2005-2006 National Survey of Children With Special Health Care Needs (unweighted n = 40 723). SETTING United States-based population. PARTICIPANTS National sample of CSHCN. MAIN EXPOSURE More complex CSHCN were defined by incorporating components of child health and family need, including medical technology dependence and care by 2 or more subspecialists. MAIN OUTCOME MEASURES Caregiver challenges were defined by family-reported care burden (including hours providing care coordination and home care), medical care use (on the basis of health care encounters in the last 12 months), and unmet needs (defined by 15 individual medical care needs and a single nonmedical service need). RESULTS Among CSHCN, 3.2% (weighted n = 324 323) met criteria for more complex children, representing 0.4% of all children in the United States. Caregivers of more complex CSHCN reported a median of 2 (interquartile range, 1-6) hours per week on care coordination and 11 to 20 (interquartile range, 3->21) hours per week on direct home care. More than half (56.8%) reported financial problems, 54.1% reported that a family member stopped working because of the childs health, 48.8% reported at least 1 unmet medical service need, and 33.1% reported difficulty in accessing nonmedical services. CONCLUSIONS Extraordinary and diverse needs are common among family caregivers of more complex CSHCN. Enhanced care coordination support, respite care, and direct home care may begin to address the substantial economic burden and the multiple unmet needs that many of these families face.

Characteristics of Hospitalizations for Patients Who Use a Structured Clinical Care Program for Children with Medical Complexity

OBJECTIVE To compare inpatient resource use trends for healthy children and children with chronic health conditions of varying degrees of medical complexity. DESIGN Retrospective cohort analysis. SETTING Twenty-eight US childrens hospitals. PATIENTS A total of 1 526 051 unique patients hospitalized from January 1, 2004, through December 31, 2009, who were assigned to 1 of 5 chronic condition groups using 3Ms Clinical Risk Group software. INTERVENTION None. MAIN OUTCOME MEASURES Trends in the number of patients, hospitalizations, hospital days, and charges analyzed with linear regression. RESULTS Between 2004 and 2009, hospitals experienced a greater increase in the number of children hospitalized with vs without a chronic condition (19.2% vs 13.7% cumulative increase, P < .001). The greatest cumulative increase (32.5%) was attributable to children with a significant chronic condition affecting 2 or more body systems, who accounted for 19.2% (n = 63 203) of patients, 27.2% (n = 111 685) of hospital discharges, 48.9% (n = 1.1 million) of hospital days, and 53.2% (

Predictors of Clinical Outcomes and Hospital Resource Use of Children After Tracheotomy

9.2 billion) of hospital charges in 2009. These children had a higher percentage of Medicaid use (56.5% vs 49.7%; P < .001) compared with children without a chronic condition. Cerebral palsy (9179 [14.6%]) and asthma (13 708 [21.8%]) were the most common primary diagnosis and comorbidity, respectively, observed among these patients. CONCLUSIONS Patients with a chronic condition increasingly used more resources in a group of childrens hospitals than patients without a chronic condition. The greatest growth was observed in hospitalized children with chronic conditions affecting 2 or more body systems. Childrens hospitals must ensure that their inpatient care systems and payment structures are equipped to meet the protean needs of this important population of children.

Trends in Resource Utilization by Children with Neurological Impairment in the United States Inpatient Health Care System: A Repeat Cross-Sectional Study

OBJECTIVE To describe the characteristics of hospitalizations for patients who use clinical programs that provide care coordination for children with multiple, chronic medical conditions. STUDY DESIGN Retrospective analysis of 1083 patients hospitalized between June 2006 and July 2008 who used a structured, pediatric complex-care clinical program within 4 childrens hospitals. Chronic diagnosis prevalence (ie, technology assistance, neurologic impairment, and other complex chronic conditions), inpatient resource utilization (ie, length of stay, 30-day readmission), and reasons for hospitalization were assessed across the programs. RESULTS Over the 2-year study period, complex-care program patients experienced a mean of 3.1 ± 2.8 admissions, a mean length of hospital stay per admission of 12.2 ± 25.5 days, and a 30-day hospital readmission rate of 25.4%. Neurologic impairment (57%) and presence of a gastrostomy tube (56%) were the most common clinical characteristics of program patients. Notable reasons for admission included major surgery (47.1%), medical technology malfunction (9.0%), seizure (6.4%), aspiration pneumonia (3.9%), vomiting/feeding difficulties (3.4%), and asthma (1.8%). CONCLUSIONS Hospitalized patients who used a structured clinical program for children with medical complexity experienced lengthy hospitalizations with high early readmission rates. Reducing hospital readmission may be one potential strategy for decreasing inpatient expenditures in this group of children with high resource utilization.

Health Inequity in Children and Youth With Chronic Health Conditions

OBJECTIVES: The objectives are to describe health outcomes and hospital resource use of children after tracheotomy and identify patient characteristics that correlate with outcomes and hospital resource use. PATIENTS AND METHODS: A retrospective analysis of 917 children aged 0 to 18 years undergoing tracheotomy from 36 childrens hospitals in 2002 with follow-up through 2007. Children were identified from ICD-9-CM tracheotomy procedure codes. Comorbid conditions (neurologic impairment [NI], chronic lung disease, upper airway anomaly, prematurity, and trauma) were identified with ICD-9-CM diagnostic codes. Patient characteristics were compared with in-hospital mortality, decannulation, and hospital resource use by using generalized estimating equations. RESULTS: Forty-eight percent of children were ≤6 months old at tracheotomy placement. Chronic lung disease (56%), NI (48%), and upper airway anomaly (47%) were the most common underlying comorbid conditions. During hospitalization for tracheotomy placement, children with an upper airway anomaly experienced less mortality (3.3% vs 11.7%; P < .001) than children without an upper airway anomaly. Five years after tracheotomy, children with NI experienced greater mortality (8.8% vs 3.5%; P ≤ .01), less decannulation (5.0% vs 11.0%; P ≤ .01), and more total number of days in the hospital (mean [SE]: 39.5 [4.0] vs 25.6 [2.6] days; P ≤ .01) than children without NI. These findings remained significant (P < .01) in multivariate analysis after controlling for other significant cofactors. CONCLUSIONS: Children with upper airway anomaly experienced less mortality, and children with NI experienced higher mortality rates and greater hospital resource use after tracheotomy. Additional research is needed to explore additional factors that may influence health outcomes in children with tracheotomy.