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:
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.
Objectives To describe the characteristics of hospitalizations for patients who utilize clinical programs that provide care coordination for children with multiple, chronic medical conditions. Study design Retrospective analysis of 1,083 patients hospitalized between June 2006 and July 2008 who utilize a structured, pediatric complex-care clinical program within four children's hospitals. Chronic diagnosis prevalence (technology assistance, neurologic impairment and other complex chronic conditions), inpatient resource utilization (length of stay, 30-day readmission), and reasons for hospitalization were assessed across the programs. Results Over the two year period, complex-care program patients experienced a mean 3.1 (SD 2.8) admissions, 12.2 days (SD 25.5) in the hospital per admission, and a 25.4% thirty-day hospital readmission rate. 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 utilized 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 to lower inpatient expenditures in this group of children with high resource utilization.
A small but growing population of children with medical complexity (CMC), often covered by Medicaid, consumes a high proportion of pediatric healthcare spending. In this article, we first describe the expenditures of CMC with Medicaid across the care continuum. We report the increasingly large amount of spending on hospital care for CMC relative to the small amount of primary care and home care spending. We then present a business case that 1) estimates how cost savings might be achieved for CMC from reductions in potentially reducible hospital and emergency department use and 2) shows how the savings could underwrite investments in outpatient and community care. We conclude by discussing the importance of these findings in the context of Medicaid quality of care and healthcare reform.
Children with special health care needs are believed to be susceptible to inequities in health and health care access. Within the group with special needs, there is a smaller group of children with medical complexity: children who require medical services beyond what is typically required by children with special health care needs. We describe health care inequities for the children with medical complexity compared to children with special health care needs but without medical complexity, based on a secondary analysis of the 2005–06 and 2009–10 National Survey of Children with Special Health Care Needs. The survey examines the prevalence, health care service use, and needs of children and youth with special care needs, as reported by their families. The inequities we examined were those based on race or ethnicity, primary language in the household, insurance type, and poverty status. We found that children with medical complexity were twice as likely to have at least one unmet need, compared to children without medical complexity. Among the children with medical complexity, uninsured status was associated with more unmet needs than privately insured status. We conclude that medical complexity itself can be a primary determinant of unmet needs.
DeepCOVID-XR, an artificial intelligence algorithm for detecting COVID-19 on chest radiographs, demonstrated performance similar to the consensus of experienced thoracic radiologists. Key Results: • DeepCOVID-XR classified 2,214 test images (1,194 COVID-19 positive) with an accuracy of 83% and AUC of 0.90 compared with the reference standard of RT-PCR. • On 300 random test images (134 COVID-19 positive), DeepCOVID-XR's accuracy was 82% (AUC 0.88) compared to 5 individual thoracic radiologists (accuracy 76%-81%) and the consensus of all 5 radiologists (accuracy 81%, AUC 0.85). • Using the consensus interpretation of the radiologists as the reference standard, DeepCOVID-XR's AUC was 0.95. Abbreviations: Coronavirus Disease 2019 (COVID-19), real time polymerase chain reaction (RT-PCR), artificial intelligence (AI), area under the curve (AUC), receiver operating characteristic (ROC), convolutional neural network (CNN) See also the editorial by van Ginneken.
With the medical and surgical advances of recent decades, a growing proportion of children rely on home-based care for daily health monitoring and care tasks. However, a dearth of available home health care providers with pediatric training to serve children and youth with medical complexity markedly limits the current capacity of home health care to meet the needs of patients and their families. In this article we analyze the workforce gaps, payment models, and policy challenges unique to home health care for children and youth with medical complexity, including legal challenges brought by families because of home nursing shortages. We propose a portfolio of solutions to address the current failures, including payment reform, improved coordination of services and pediatric home health training through partnerships with child-focused health systems, telehealth-enabled opportunities to bridge current workforce gaps, and the better alignment of pediatric care with the needs of adult-focused long-term services and supports.
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