Hospital-based comprehensive care programs for children with special health care needs: a systematic review.
TL;DR: Although positive, the evidence supporting comprehensive hospital-based programs for children with special health care needs is restricted primarily to nonexperimental studies of children with categorical diseases and is limited by inadequate outcome measures.
Abstract: Objective To examine the effectiveness of hospital-based comprehensive care programs in improving the quality of care for children with special health care needs. Data Sources A systematic review was conducted using Ovid MEDLINE, CINAHL, EMBASE, PsycINFO, Sociological Abstracts SocioFile, and Web of Science. Study Selection Evaluations of comprehensive care programs for categorical (those with single disease) and noncategorical groups of children with special health care needs were included. Selected articles were reviewed independently by 2 raters. Data Extraction Models of care focused on comprehensive care based at least partially in a hospital setting. The main outcome measures were the proportions of studies demonstrating improvement in the Institute of Medicine's quality-of-care domains (effectiveness of care, efficiency of care, patient or family centeredness, patient safety, timeliness of care, and equity of care). Data Synthesis Thirty-three unique programs were included, 13 (39%) of which were randomized controlled trials. Improved outcomes most commonly reported were efficiency of care (64% [49 of 76 outcomes]), effectiveness of care (60% [57 of 95 outcomes]), and patient or family centeredness (53% [10 of 19 outcomes). Outcomes less commonly evaluated were patient safety (9% [3 of 33 programs]), timeliness of care (6% [2 of 33 programs]), and equity of care (0%). Randomized controlled trials occurred more frequently in studies evaluating categorical vs noncategorical disease populations (11 of 17 [65%] vs 2 of 16 [17%], P = .008). Conclusions Although positive, the evidence supporting comprehensive hospital-based programs for children with special health care needs is restricted primarily to nonexperimental studies of children with categorical diseases and is limited by inadequate outcome measures. Additional high-quality evidence with appropriate comparative groups and broad outcomes is necessary to justify continued development and growth of programs for broad groups of children with special health care needs.
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TL;DR: CMC make multiple transitions across providers and care settings and CMC with TA have higher costs and home care use and Initiatives to improve their health outcomes and decrease costs need to focus on the entire continuum of care.
Abstract: 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.
473 citations
TL;DR: Extraordinary and diverse needs are common among family caregivers of more complex CSHCN and 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.
Abstract: 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 child's 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.
414 citations
Cites background from "Hospital-based comprehensive care p..."
...Hospital-based programmatic models of care for more complex CSHCN may deliver enhanced care coordination and technical expertise that is necessary to improve care, health outcomes, and family satisfaction.(39) Comprehensive medical care and care coordination for more complex CSHCN in a hospital-based clinic may reduce hospitalizations and overall costs....
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TL;DR: Findings from a single site of selected patients with a limited number of clinicians require study in larger, broader populations before conclusions about generalizability to other settings can be reached.
Abstract: Importance Patient-centered medical homes have not been shown to reduce adverse outcomes or costs in adults or children with chronic illness. Objective To assess whether an enhanced medical home providing comprehensive care prevents serious illness (death, intensive care unit [ICU] admission, or hospital stay >7 days) and/or reduces costs among children with chronic illness. Design, Setting, and Participants Randomized clinical trial of high-risk children with chronic illness (≥3 emergency department visits, ≥2 hospitalizations, or ≥1 pediatric ICU admissions during previous year, and >50% estimated risk for hospitalization) treated at a high-risk clinic at the University of Texas, Houston, and randomized to comprehensive care (n = 105) or usual care (n = 96). Enrollment was between March 2011 and February 2013 (when predefined stopping rules for benefit were met) and outcome evaluations continued through August 31, 2013. Interventions Comprehensive care included treatment from primary care clinicians and specialists in the same clinic with multiple features to promote prompt effective care. Usual care was provided locally in private offices or faculty-supervised clinics without modification. Main Outcomes and Measures Primary outcome: children with a serious illness (death, ICU admission, or hospital stay >7 days), costs (health system perspective). Secondary outcomes: individual serious illnesses, medical services, Medicaid payments, and medical school revenues and costs. Results In an intent-to-treat analysis, comprehensive care decreased both the rate of children with a serious illness (10 per 100 child-years vs 22 for usual care; rate ratio [RR], 0.45 [95% CI, 0.28-0.73]), and total hospital and clinic costs ($16 523 vs $26 781 per child-year, respectively; cost ratio, 0.58 [95% CI, 0.38-0.88]). In analyses of net monetary benefit, the probability that comprehensive care was cost neutral or cost saving was 97%. Comprehensive care reduced (per 100 child-years) serious illnesses (16 vs 44 for usual care; RR, 0.33 [95% CI, 0.17-0.66]), emergency department visits (90 vs 190; RR, 0.48 [95% CI, 0.34-0.67]), hospitalizations (69 vs 131; RR, 0.51 [95% CI, 0.33-0.77]), pediatric ICU admissions (9 vs 26; RR, 0.35 [95% CI, 0.18-0.70]), and number of days in a hospital (276 vs 635; RR, 0.36 [95% CI, 0.19-0.67]). Medicaid payments were reduced by $6243 (95% CI, $1302-$11 678) per child-year. Medical school losses (costs minus revenues) increased by $6018 (95% CI, $5506-$6629) per child-year. Conclusions and Relevance Among high-risk children with chronic illness, an enhanced medical home that provided comprehensive care to promote prompt effective care vs usual care reduced serious illnesses and costs. These findings from a single site of selected patients with a limited number of clinicians require study in larger, broader populations before conclusions about generalizability to other settings can be reached. Trial Registration clinicaltrials.gov Identifier:NCT02128776
208 citations
Cites background or result from "Hospital-based comprehensive care p..."
...3,4,6 We believe these results reflect a combination of factors: (1) a high-risk population with high health care costs30; (2) experienced clinicians knowledgeable about each patient and available at all hours; (3) expert subspecialty care available at the same or at Table 4....
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...Previous Presentations: Preliminary results were presented at: (1) the University of Texas Systems QI Conference; October 2, 2012; San Antonio, Texas; (2) the Pediatric Academic Society Conference; May 1, 2012; Boston, Massachusetts; (3) the Pediatric Academic Society Conference; May 6, 2013; Washington, DC; (4) the University of Texas Medical School Grand Rounds; April 30, 2013; Houston, Texas; (5) the University of Texas McCombs School of Business Innovations in Health Care Conference; April 11, 2013; Austin, Texas; (6) the Hispanic Medical Society; March 27, 2014; Washington, DC; and (7) the American Thoracic Society Conference; May 17, 2014; San Diego, California....
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TL;DR: Differences in patterns of care at general hospitals and freestanding children's hospitals may inform clinical programs, research, and quality improvement efforts.
Abstract: BACKGROUND Children may be hospitalized at general hospitals or freestanding children's hospitals. Knowledge about how inpatient care differs at these hospitals is important to inform national research and quality efforts. OBJECTIVE To describe the volume and characteristics of pediatric hospitalizations at acute care general and freestanding children's hospitals in the United States. DESIGN, PATIENTS, AND SETTING Cross-sectional study of hospitalizations in the United States among children <18 years, excluding in-hospital births, using the Healthcare Cost and Utilization Project's 2012 Kids' Inpatient Database. MEASUREMENT We examined differences between hospitalizations at general and freestanding children's hospitals, applying weights to generate national estimates. Reasons for hospitalization were categorized using a pediatric grouper, and differences in hospital volumes were assessed for common diagnoses. RESULTS A total of 1,407,822 (standard deviation 50,456) hospitalizations occurred at general hospitals, representing 71.7% of pediatric hospitalizations. Hospitalizations at general hospitals accounted for 63.6% of hospital days and 50.0% of pediatric inpatient healthcare costs. Median volumes of pediatric hospitalizations, per hospital, were significantly lower at general hospitals than freestanding children's hospitals for common medical and surgical diagnoses. Although the most common reasons for hospitalization were similar, the most costly conditions differed. CONCLUSIONS In 2012, more than 70% of pediatric hospitalizations occurred at general hospitals in the United States. Differences in patterns of care at general hospitals and freestanding children's hospitals may inform clinical programs, research, and quality improvement efforts. Journal of Hospital Medicine 2016;11:743-749. © 2016 Society of Hospital Medicine.
166 citations
TL;DR: The epidemiological shift among infants, children, and youth is described and sociodemographic and other factors contributing to it are examined and how health systems are responding by reorganizing and innovating is described.
Abstract: Since the early twentieth century, medical and public health innovations have led to dramatic changes in the epidemiology of health conditions among infants, children, and youth. Infectious diseases have substantially diminished, and survival rates for children with cancer, congenital heart disease, leukemia, and other conditions have greatly improved. However, over the past fifty years chronic health conditions and disabilities among children and youth have steadily risen, primarily from four classes of common conditions: asthma, obesity, mental health conditions, and neurodevelopmental disorders. In this article we describe the epidemiological shift among infants, children, and youth and examine sociodemographic and other factors contributing to it. We describe how health systems are responding by reorganizing and innovating. For children with rare complex conditions, concentrating subspecialty care at regional centers has been effective. For the much larger numbers of children with common chronic condi...
154 citations
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TL;DR: Although many of the problems encountered were related to the critical assessment of qualitative research, the authors argue that the method of systematic review can be adapted for use with different data and across disciplines.
Abstract: The authors describe a method of systematically reviewing research from different paradigms. They draw on the methods adapted, developed, and designed during a study concerned with the delivery of care across professional boundaries. Informed by the established method of systematic review, the authors undertook the review in distinct stages. They describe the methods developed for each stage and outline the difficulties encountered, the solutions devised, and the appraisal tools developed. Although many of the problems encountered were related to the critical assessment of qualitative research, the authors argue that the method of systematic review can be adapted for use with different data and across disciplines.
868 citations
TL;DR: This article presents 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 and suggests a research agenda that uses a uniform definition.
Abstract: 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.
868 citations
TL;DR: 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 the degree to which CCC hospitalizations are associated with attributes that are consistent with heightened medical complexity is assessed.
Abstract: Children with special health care needs (CSHCN), defined as children who have or at risk for a chronic physical, developmental, behavioral, or emotional condition and require health and related services of a type or an amount beyond that required by children generally, constitute 18% (~12.6 million) of US children.1 The Institute of Medicine has identified CSHCN as a priority population,2 in part because of their use of health resources. A small proportion of children account for the bulk of health care expenditures in the United States: 20% of children who use medical services account for ~80% of all children's health care expenditures.3
Chronic illness accounts for the majority of children's hospital days and dollars.4 A smaller set of CSHCN, termed medically complex children, are perceived to use a disproportionate amount of resources, particularly in the inpatient and tertiary care settings.5 Consistent and complete identification criteria of this subpopulation for administrative, clinical, and research purposes, however, remains elusive.5–7 A prototypical medically complex child has a diversity of conditions and multisystem disease; may be technology-dependent; has frequent inpatient admissions; and requires multiple medications, multiple subspecialists, and optimal care coordination across inpatient and outpatient settings.5 Previous work describing the 6.5% of children with disabilities,8,9 the nearly 5% of children with multiple chronic conditions,10 or children with technology dependence5 likely described sets of children with some degree of medical complexity.
For accurate attribution of health care use of medically complex children, an operational definition is needed for use in administrative data sets. One potential method to study medically complex children is to group International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM) codes so as to specify a set of complex chronic conditions (CCCs). Developed initially for the purpose of identifying children who are at risk for death,11–15 the working definition for a CCC was “any medical condition that can be reasonably expected to last at least 12 months (unless death intervenes) and to involve either several different organ systems or 1 system severely enough to require specialty pediatric care and probably some period of hospitalization in a tertiary care center.”11 Although CCCs likely do not capture all medically complex children, the definition and implementation of the CCC scheme incorporates 3 hallmarks of medical complexity: chronic medical conditions, often existing in comorbid combinations, and associated with intensive inpatient use. In this study, we sought to determine whether the proportion of pediatric inpatient use for CCCs increased over time from 1997 to 2006 and to assess the degree to which hospitalizations of patients with CCCs were associated with use of inpatient health care resources and outcomes consistent with heightened medical complexity.
609 citations
TL;DR: An overview of all definitions and operationalizations that have been applied to measure the prevalence of chronic health conditions in childhood is presented to present an overview of the wide variability in reported prevalence rates.
Abstract: ContextChanges in the prevalence of chronic health conditions in childhood have considerable societal consequences for health care planning and for employment. To obtain valid and reliable estimates of the prevalence of chronic health conditions, a clear definition is needed.ObjectiveTo present an overview of all definitions and operationalizations that have been applied to measure the prevalence of chronic health conditions in childhood.Data SourcesPubMed and the Web of Science were searched for articles published up to December 2006. Also, references were searched by hand for related articles.Study SelectionNon–English- and non–Dutch-language articles were excluded. Of 7252 articles found, 64 articles that stated a conceptual definition and/or operationalization of chronic health conditions in children (aged 0-18 years) were included.Data ExtractionData on the (1) definition; (2) operationalization in terms of source of information, method of information retrieval, and study population; and (3) resulting prevalence rate were extracted by 2 independent reviewers.Data SynthesisA large range of definitions were in use, of which 4 were cited by many authors. Various operationalizations of the concepts that were measured were identified. Chronic health conditions in childhood prevalence estimates ranged from 0.22% to 44%, depending on these operationalizations.ConclusionsThe wide variability in reported prevalence rates of chronic health conditions in childhood can be explained by considerable diversity in the concepts and operationalizations used. International consensus about the conceptual definition of chronic health conditions in childhood is needed.
419 citations
"Hospital-based comprehensive care p..." refers background in this paper
...Specifically, our research questions were 2-fold: (1) Does a hospital-based comprehensive service delivery model improve the quality of care for CSHCN? (2) Is there a difference in the body of evidence for these care delivery models between categorical (those with single disease) vs noncategorical subpopulations of CSHCN?...
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TL;DR: A current national profile of the prevalence and impact of chronic conditions causing childhood disability is provided, which has profound impacts on children, the education system, and the health care system.
Abstract: OBJECTIVES: This study provides a current national profile of the prevalence and impact of chronic conditions causing childhood disability. Disability is defined as a long-term reduction in ability to conduct social role activities, such as school or play, because of a chronic physical or mental condition. METHODS: A cross-sectional descriptive analysis was performed on data from 99513 children younger than 18 years who were included in the 1992-1994 National Health Interview Survey. The response rate exceeded 93% during each year. RESULTS: A significant proportion of children, estimated at 6.5% of all US children, experienced some degree of disability. The most common causes of childhood disability were respiratory diseases and mental impairments. Prevalence of disability was higher for older children, boys, and children from low-income and single-parent families. Childhood disability is estimated to result in 66 million restricted activity days annually, including 24 million days lost from school. Furth...
389 citations