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. Pediatrics 2011;127:529-538Since 1998, the Maternal and Child Health Bureau has defined children with special health care needs (CSHCN) as those children who have or are at increased risk of a chronic physical, developmental, behavioral, or emotional condition and require health care and related services of a type or amount beyond that required by children generally. 1 An extensive process informed the development of an intentionally broad and inclusive CSHCN definition for the definition to be meaningful for broad program planning and development. Although 13% to 18% of children are considered to have special needs (excluding those who are "at risk" for special needs), 2 there is considerable variation in medical complexity, functional limitations, and resource need among CSHCN. 3,4 One important subgroup is the children who are the most medically fragile and have the most intensive health care needs. Examples vary and include children who have a congenital or acquired multisystem disease, a severe neurologic condition with marked functional impairment, or patients with cancer/cancer survivors with ongoing disability in multiple areas. Terms traditionally used to describe this subgroup include a combination of children with 1 or more of the following terms: complex, chronic, medical, conditions, and/or needs (eg, complex chronic conditions [CCCs], 5 complex medical needs, 6 complex medical conditions, 7 and complex health conditions 8 ), as well as medically complex children. 9,10 In this article, we use the term "children with medical complexity" (CMC). The rationales are that it uses "person-first" terminology and refers to the extra time, expertise, and resources necessary to achieve optimal health outcomes for these children. AUTHORS:

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.

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.

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 children’s hospitals. Design, Setting, and Patients Retrospective cohort analysis of 317 643 patients (n=579 504 admissions) admitted to 37 US children’s 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% ($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.

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Context Readmission rates are used as an indicator of the quality of care that patients receive during a hospital admission and after discharge. Objective To determine the prevalence of pediatric readmissions and the magnitude of variation in pediatric readmission rates across hospitals. Design, Setting, Patients We analyzed 568,845 admissions at 72 children's hospitals between 7/1/2009 and 6/30/2010 in the National Association of Children's Hospitals and Related Institutions Case Mix dataset. We estimated hierarchical regression models for 30-day readmission rates by hospital, accounting for age and chronic condition indicators. Hospitals with adjusted readmission rates that were one standard deviation above and below the mean were defined as having “high” and “low” rates, respectively. Main Outcome Measure Thirty-day unplanned readmissions following admission for any diagnosis and for the 10 admission diagnoses with the highest readmission prevalence. Planned readmissions were identified with ICD-9-CM procedure codes. Results The 30-day unadjusted readmission rate for all hospitalized children was 6.5% (n=36,734). Adjusted rates were 28.6% greater in hospitals with high vs. low readmission rates [7.2% (95% CI 7.1–7.2%) vs. 5.6% (95% CI 5.6-5.6%)]. For the 10 admissions diagnoses with the highest readmission prevalence, the adjusted rates were 17.0% to 66.0% greater in hospitals with high vs. low readmission rates. For example, sickle cell rates were 20.1% (95% CI 20.0–20.3%) vs. 12.7% (95% CI 12.6–12.8%) in high vs. low hospitals, respectively. Conclusions Among patients admitted to acute care pediatric hospitals, the rate of unplanned readmissions at 30 days was 6.5%. There was wide variability in readmission rates across conditions and hospitals.

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 children’s 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.

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 children’s 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 3M’s 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% ($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 children’s hospitals than patients without a chronic condition. The greatest growth was observed in hospitalized children with chronic conditions affecting 2 or more body systems. Children’s hospitals must ensure that their inpatient care systems and payment structures are equipped to meet the protean needs of this important population of children.