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1.  Spinal muscular atrophy type 1: Are proactive respiratory interventions associated with longer survival? 
Context
Spinal muscular atrophy type 1, an autosomal recessive motor neuron disease, is a leading genetic cause of death in infancy and early childhood.
Objective
To determine whether the early initiation of noninvasive respiratory interventions is associated with longer survival.
Design
Single-institution retrospective cohort study identified children with spinal muscular atrophy type 1 from January 1, 2002 to May 1, 2009 who were followed for 2.3 mean yrs.
Setting
Tertiary care children’s hospital and outpatient clinics in a vertically integrated healthcare system.
Patients or Other Participants
Forty-nine children with spinal muscular atrophy type 1 were grouped according to the level of respiratory support their caregivers chose within the first 3 months after diagnosis: proactive respiratory care (n = 26) and supportive care (n = 23).
Interventions
Proactive respiratory care included bilevel non-invasive ventilation during sleep and twice a day cough assist while supportive respiratory care included suctioning, with or without supplemental oxygen.
Measurements and Main Results
Kaplan–Meier survival curves were assessed based on intention to treat. Children treated with early proactive respiratory support had statistically longer survival compared to supportive care (log rank 0.047); however, the adjusted hazard ratio for survival was not statistically different (2.44 [95% confidence interval 0.84–7.1]). Children in the proactive group were more likely to be hospitalized for respiratory insufficiency (83% vs. 46%) and had shortened time after diagnosis until first hospital admission for respiratory insufficiency (median 118 vs. 979 days).
Conclusion
Longer survival time with spinal muscular atrophy type 1 is associated with early, noninvasive respiratory care interventions after diagnosis.
doi:10.1097/PCC.0b013e3182388ad1
PMCID: PMC4334579  PMID: 22198810
noninvasive ventilation; respiratory failure; spinal muscular atrophy; survival analysis
2.  Neonatal Magnesium Levels Correlate with Motor Outcomes in Premature Infants: A Long-Term Retrospective Cohort Study 
Objective: Chronic neurological deficits are a significant complication of preterm birth. Magnesium supplementation has been suggested to have neuroprotective function in the developing brain. Our objective was to determine whether higher neonatal serum magnesium levels were associated with better long-term neurodevelopmental outcomes in very-low birth weight infants.
Study Design: A retrospective cohort of 75 preterm infants (<1500 g, gestational age <27 weeks) had follow-up for the outcomes of abnormal motor exam and for epilepsy. Average total serum magnesium level in the neonate during the period of prematurity was the main independent variable assessed, tested using a Wilcoxon rank-sum test.
Results: Higher average serum magnesium level was associated with a statistically significant decreased risk for abnormal motor exam (p = 0.037). A lower risk for epilepsy in the group with higher magnesium level did not reach statistical significance (p = 0.06).
Conclusion: This study demonstrates a correlation between higher neonatal magnesium levels and decreased risk for long-term abnormal motor exam. Larger studies are needed to evaluate the hypothesis that higher neonatal magnesium levels can improve long-term neurodevelopmental outcomes.
doi:10.3389/fped.2014.00120
PMCID: PMC4220726  PMID: 25414842
magnesium; prematurity; neurological; VLBW; neuroprotection; neonate
3.  National Variation in Costs and Mortality for Leukodystrophy Patients in U.S. Children’s Hospitals 
Pediatric neurology  2013;49(3):156-162.e1.
Background
Inherited leukodystrophies are progressive, debilitating neurological disorders with few treatment options and high mortality rates. Our objective was to determine national variation in the costs for leukodystrophy patients, and to evaluate differences in their care.
Methods
We developed an algorithm to identify inherited leukodystrophy patients in de-identified data sets using a recursive tree model based on ICD-9 CM diagnosis and procedure charge codes. Validation of the algorithm was performed independently at two institutions, and with data from the Pediatric Health Information System (PHIS) of 43 U.S. children’s hospitals, for a seven year time period, 2004–2010.
Results
A recursive algorithm was developed and validated, based on six ICD-9 codes and one procedure code, that had a sensitivity up to 90% (range 61–90%) and a specificity up to 99% (range 53–99%) for identifying inherited leukodystrophy patients. Inherited leukodystrophy patients comprise 0.4% of admissions to children’s hospitals and 0.7% of costs. Over seven years these patients required $411 million of hospital care, or $131,000/patient. Hospital costs for leukodystrophy patients varied at different institutions, ranging from 2 to 15 times more than the average pediatric patient. There was a statistically significant correlation between higher volume and increased cost efficiency. Increased mortality rates had an inverse relationship with increased patient volume that was not statistically significant.
Conclusions
We developed and validated a code-based algorithm for identifying leukodystrophy patients in deidentified national datasets. Leukodystrophy patients account for $59 million of costs yearly at children’s hospitals. Our data highlight potential to reduce unwarranted variability and improve patient care.
doi:10.1016/j.pediatrneurol.2013.06.006
PMCID: PMC3748620  PMID: 23953952
Leukodystrophy; cost analysis; hospitalization; pediatric; health services research
4.  Preventable infections in children with leukodystrophy 
Children with inherited leukodystrophies have high hospitalization rates, often associated with infection. We studied whether potentially modifiable risk factors (preexisting indwelling central intravenous access, urinary catheter, hardware, or mechanical ventilation; and influenza vaccine) were associated with infection-related hospitalization in children with leukodystrophy. Central intravenous access was associated with sepsis (odds ratio [OR] 9.8); urinary catheter was associated with urinary tract infections (OR 9.0); lack of seasonal vaccination was associated with influenza (OR 6.4); and mechanical ventilation was associated with pneumonia (OR 2.7). We conclude that potentially modifiable risk factors are significantly associated with infection and hospitalization in children with leukodystrophies.
doi:10.1002/acn3.61
PMCID: PMC4063358  PMID: 24955379
5.  Determinants of Health Care Utilization in a Population-Based Leukodystrophy Cohort 
The Journal of pediatrics  2012;162(3):624-628.e1.
Objectives
To determine the costs for children with leukodystrophies, and whether high costs were associated with characteristic clinical features or resources utilization.
Study design
We determined health care costs in a population cohort of 122 patients with leukodystrophy including inpatient, outpatient, and emergency department use, over a 9 year period. We analyzed differences in patients with high costs (>85th percentile) and their health care utilization.
Results
Patients with leukodystrophy had significant variability in resource utilization, with the top 15th percentile of patients accounting for 73% of costs ($9.6 million). The majority of costs, 81% ($10.8 million), arose from inpatient hospitalization. High-cost patients had more and longer hospitalizations, increased requirements for intensive unit care and mechanical ventilation, and significantly more infections. Importantly, bone marrow transplantation did not solely account for the difference between high-cost and low-cost groups.
Conclusion
Inpatient hospitalization is the greatest source of health care resource utilization in patients with leukodystrophy. A minority of patients account for the majority of costs, primarily due to an increased volume of hospitalization. Strategies to improve care and reduce costs will need to reduce inpatient stays and target modifiable reasons for hospitalization.
doi:10.1016/j.jpeds.2012.08.046
PMCID: PMC3549018  PMID: 23069195
Leukodystrophy; cost analysis; hospitalization; pediatric; bone marrow transplant
6.  Macrophage Activation Syndrome in Children with Systemic Lupus Erythematosus and Juvenile Idiopathic Arthritis 
Arthritis and rheumatism  2012;64(12):4135-4142.
Objectives
To describe patient demographics, interventions, and outcomes in hospitalized children with macrophage activation syndrome (MAS) complicating systemic lupus erythematosus (SLE) or juvenile idiopathic arthritis (JIA).
Methods
Retrospective cohort study of the Pediatric Health Information System (PHIS) database, Oct 1, 2006 to September 30, 2010. Participants had ICD-9-CM diagnosis codes for MAS and either SLE or JIA. The primary outcome was hospital mortality. Secondary outcomes included intensive care unit (ICU) admission, critical care interventions, and medication use.
Results
121 children at 28 children’s hospitals met inclusion criteria, including 19 with SLE and 102 with JIA. Index admission mortality was 7% (8/121). ICU admission (33%), mechanical ventilation (26%), and inotrope/vasopressor therapy (26%) were common. Compared to children with JIA, those with SLE had similar mortality (6% versus 11%, exact p = 0.6), more ICU care (63% versus 27%, p = 0.002), more mechanical ventilation (53% versus 21%, p = 0.003), and more cardiovascular dysfunction (inotrope/vasopressor 47% versus 23%, p = 0.02). Children with SLE and JIA received cyclosporine at similar rates, but more children with SLE received cyclophosphamide and mycophenolate mofetil and more children with JIA received interleukin-1 antagonists.
Conclusions
Organ system dysfunction is common in children with rheumatic diseases complicated by MAS, and children with underlying SLE require more organ system support than children with JIA. Current treatment of pediatric MAS varies based on the underlying rheumatic disease.
doi:10.1002/art.34661
PMCID: PMC3505557  PMID: 22886474
7.  Clinical Value of an Ambulatory-Based Antibiogram for Uropathogens in Children 
Unnecessarily broad-spectrum antibiotic prescribing for ambulatory pediatric urinary tract infection may result from clinicians not having antibiograms specific to this population. Comparing an existing hospital-based with a proposed ambulatory uropathogen antibiogram for children in Utah, Escherichia coli accounted for a larger percentage and was more susceptible to narrower-spectrum antibiotics, demonstrating the potential need for ambulatory pediatric antibiograms.
doi:10.1093/jpids/pis055
PMCID: PMC3656542  PMID: 23687582
Antibiogram; Drug Resistance; Bacterial; Urinary Tract Infections; Escherichia coli
8.  The Joint Commission Children’s Asthma Care Quality Measures and Asthma Readmissions 
Pediatrics  2012;130(3):482-491.
BACKGROUND AND OBJECTIVES:
The Joint Commission introduced 3 Children’s Asthma Care (CAC 1–3) measures to improve the quality of pediatric inpatient asthma care. Validity of the commission’s measures has not yet been demonstrated. The objectives of this quality improvement study were to examine changes in provider compliance with CAC 1–3 and associated asthma hospitalization outcomes after full implementation of an asthma care process model (CPM).
METHODS:
The study included children aged 2 to 17 years who were admitted to a tertiary care children’s hospital for acute asthma between January 1, 2005, and December 31, 2010. The study was divided into 3 periods: preimplementation (January 1, 2005–December 31, 2007), implementation (January 1, 2008–March 31, 2009), and postimplementation (April 1, 2009–December 31, 2010) periods. Changes in provider compliance with CAC 1–3 and associated changes in hospitalization outcomes (length of stay, costs, PICU transfer, deaths, and asthma readmissions within 6 months) were measured. Logistic regression was used to control for age, gender, race, insurance type, and time.
RESULTS:
A total of 1865 children were included. Compliance with quality measures before and after the CPM implementation was as follows: 99% versus 100%, CAC-1; 100% versus 100%, CAC-2; and 0% versus 87%, CAC-3 (P < .01). Increased compliance with CAC-3 was associated with a sustained decrease in readmissions from an average of 17% to 12% (P = .01) postimplementation. No change in other outcomes was observed.
CONCLUSIONS:
Implementation of the asthma CPM was associated with improved compliance with CAC-3 and with a delayed, yet significant and sustained decrease in hospital asthma readmission rates, validating CAC-3 as a quality measure. Due to high baseline compliance, CAC-1 and CAC-2 are of questionable value as quality measures.
doi:10.1542/peds.2011-3318
PMCID: PMC4074621  PMID: 22908110
asthma; compliance; hospitalization; quality improvement; quality of care
9.  Federating Clinical Data from Six Pediatric Hospitals: Process and Initial Results for Microbiology from the PHIS+ Consortium 
Microbiology study results are necessary for conducting many comparative effectiveness research studies. Unlike core laboratory test results, microbiology results have a complex structure. Federating and integrating microbiology data from six disparate electronic medical record systems is challenging and requires a team of varied skills. The PHIS+ consortium which is partnership between members of the Pediatric Research in Inpatient Settings (PRIS) network, the Children’s Hospital Association and the University of Utah, have used “FURTHeR’ for federating laboratory data. We present our process and initial results for federating microbiology data from six pediatric hospitals.
PMCID: PMC3540481  PMID: 23304298
10.  Characteristics of Hospitalizations for Patients who Utilize a Structured Clinical-Care Program for Children with Medical Complexity 
The Journal of pediatrics  2011;159(2):284-290.
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.
doi:10.1016/j.jpeds.2011.02.002
PMCID: PMC3138997  PMID: 21429511
children with medical complexity; hospitalization; children's hospital; neurologic impairment; technology dependence; children with special health care needs
11.  Factors associated with intern noncompliance with the 2003 Accreditation Council for Graduate Medical Education’s 30-hour duty period requirement 
BMC Medical Education  2012;12:33.
Background
In 2003 the Accreditation Council for Graduate Medical Education mandated work hour restrictions. Violations can results in a residency program being cited or placed on probation. Recurrent violations could results in loss of accreditation. We wanted to determine specific intern and workload factors associated with violation of a specific mandate, the 30-hour duty period requirement.
Methods
Retrospective review of interns’ performance against the 30-hour duty period requirement during inpatient ward rotations at a pediatric residency program between June 24, 2008 and June 23, 2009. The analytical plan included both univariate and multivariable logistic regression analyses.
Results
Twenty of the 26 (77%) interns had 80 self-reported episodes of continuous work hours greater than 30 hours. In multivariable analysis, noncompliance was inversely associated with the number of prior inpatient rotations (odds ratio: 0.49, 95% confidence interval (0.38, 0.64) per rotation) but directly associated with the total number of patients (odds ratio: 1.30 (1.10, 1.53) per additional patient). The number of admissions on-call, number of admissions after midnight and number of discharges post-call were not significantly associated with noncompliance. The level of noncompliance also varied significantly between interns after accounting for intern experience and workload factors. Subject to limitations in statistical power, we were unable to identify specific intern characteristics, such as demographic variables or examination scores, which account for the variation in noncompliance between interns.
Conclusions
Both intern and workload factors were associated with pediatric intern noncompliance with the 30-hour duty period requirement during inpatient ward rotations. Residency programs must develop information systems to understand the individual and experience factors associated with noncompliance and implement appropriate interventions to ensure compliance with the duty hour regulations.
doi:10.1186/1472-6920-12-33
PMCID: PMC3398848  PMID: 22621439
12.  The APA and the Rise of Pediatric Generalist Network Research 
Academic pediatrics  2011;11(3):195-204.
The Academic Pediatric Association (APA – formerly the Ambulatory Pediatric Association) first encouraged multi-institutional collaborative research among its members over thirty years ago. Individual APA members went on subsequently to figure prominently in establishing formal research networks. These enduring collaborations have been established to conduct investigations in a variety of generalist contexts. At present, four generalist networks – Pediatric Research in Office Settings (PROS), the Pediatric Emergency Care Applied Network (PECARN), the COntinuity Research NETwork (CORNET), and Pediatric Research in Inpatient Settings (PRIS) – have a track record of extensive achievement in generating new knowledge aimed at improving the health and health care of children. This review details the history, accomplishments, and future directions of these networks and summarizes the common themes, strengths, challenges and opportunities inherent in pediatric generalist network research.
doi:10.1016/j.acap.2010.11.004
PMCID: PMC3090720  PMID: 21282083
13.  Children With Medical Complexity: An Emerging Population for Clinical and Research Initiatives 
Pediatrics  2011;127(3):529-538.
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.
doi:10.1542/peds.2010-0910
PMCID: PMC3387912  PMID: 21339266
medical complexity; special needs; chronic illness/conditions; delivery of care; definitions
14.  Trends in Resource Utilization by Children with Neurological Impairment in the United States Inpatient Health Care System: A Repeat Cross-Sectional Study 
PLoS Medicine  2012;9(1):e1001158.
Jay Berry and colleagues report findings from an analysis of hospitalization data in the US, examining the proportion of inpatient resources attributable to care for children with neurological impairment.
Background
Care advances in the United States (US) have led to improved survival of children with neurological impairment (NI). Children with NI may account for an increasing proportion of hospital resources. However, this assumption has not been tested at a national level.
Methods and Findings
We conducted a study of 25,747,016 US hospitalizations of children recorded in the Kids' Inpatient Database (years 1997, 2000, 2003, and 2006). Children with NI were identified with International Classification of Diseases, 9th Revision, Clinical Modification diagnoses resulting in functional and/or intellectual impairment. We assessed trends in inpatient resource utilization for children with NI with a Mantel-Haenszel chi-square test using all 4 y of data combined. Across the 4 y combined, children with NI accounted for 5.2% (1,338,590) of all hospitalizations. Epilepsy (52.2% [n = 538,978]) and cerebral palsy (15.9% [n = 164,665]) were the most prevalent NI diagnoses. The proportion of hospitalizations attributable to children with NI did not change significantly (p = 0.32) over time. In 2006, children with NI accounted for 5.3% (n = 345,621) of all hospitalizations, 13.9% (n = 3.4 million) of bed days, and 21.6% (US$17.7 billion) of all hospital charges within all hospitals. Over time, the proportion of hospitalizations attributable to children with NI decreased within non-children's hospitals (3.0% [n = 146,324] in 1997 to 2.5% [n = 113,097] in 2006, p<.001) and increased within children's hospitals (11.7% [n = 179,324] in 1997 to 13.5% [n = 209,708] in 2006, p<0.001). In 2006, children with NI accounted for 24.7% (2.1 million) of bed days and 29.0% (US$12.0 billion) of hospital charges within children's hospitals.
Conclusions
Children with NI account for a substantial proportion of inpatient resources utilized in the US. Their impact is growing within children's hospitals. We must ensure that the current health care system is staffed, educated, and equipped to serve this growing segment of vulnerable children.
Please see later in the article for the Editors' Summary
Editors' Summary
Background
Disorders of the central and peripheral nervous system, often referred to as neurological impairments, are common in infants and children and can cause functional or intellectual disability. There are many causes of neurological impairments, including birth trauma, congenital abnormalities, structural defects, infections, tumors, blood flow disruption, genetic and metabolic conditions, and toxins. Symptoms can be progressive or static and vary widely depending on the condition. For example, developmental delay, changes in activity—often due to muscle wasting—and seizures may be common symptoms of neurological conditions in children. In many countries, extremely premature babies, and children with conditions such as spina bifida and muscular dystrophy, now receive better care than they used to, and may survive longer. However, although such children may have long-term care needs, they may receive crisis-driven, uncoordinated care, even in high-income countries.
Why Was This Study Done?
It is not well understood what proportion of hospital resource use is attributable to care for children with neurological impairments, although it's thought that this group may account for an increasing proportion of hospital resources. In this study, the researchers attempted to answer this question, specifically for the US, by evaluating national trends in hospital admissions for children with neurological impairments.
What Did the Researchers Do and Find?
The researchers used a multi-state database of US hospital admissions for children aged 0–18 years, known as the KID—the Healthcare Cost and Utilization Project's Kids' Inpatient Database—to identify the number of hospital admissions, total number of days spent in the hospital, and total health care costs for children with neurological impairments from 1997 to 2006. The researchers identified appropriate admissions by using diagnostic codes from the International Classification of Diseases, 9th Revision, Clinical Modification (ICD-9-CM), which were reviewed and approved by two pediatric neurologists.
The researchers found that from 1997 to 2006, there were 25,747,016 hospital admissions for children aged 0–18 years, and of these, 1,338,590 (5.2%) were associated with children who had a definite diagnosis of neurological impairment. The most prevalent diagnoses among all hospitalized children with neurological impairments were epilepsy (52.2%) and cerebral palsy (15.9%). Furthermore, across the study period, the proportion of children aged 13–18 years admitted to hospitals with neurological impairments increased from 7.3% to 9.9%. The researchers also found that children with neurological impairments accounted for an increasing proportion of days spent in a hospital (12.9% in 1997 to 13.9% in 2006). In addition, there was a substantial increase in admissions for infants with neurological impairments compared to infants without neurological impairments. The researchers also found that throughout the study period, there was a general pattern for children with neurological impairments to be admitted to pediatric hospitals, rather than general hospitals. Within children's hospitals, children with neurological impairments accounted for a substantial proportion of resources over the study period, including nearly one-third of all hospital charges.
What Do These Findings Mean?
These findings show that in the US, children with neurological impairments account for a substantial proportion of inpatient resources utilized, particularly within children's hospitals, necessitating the need for adequate clinical care and a coordination of efforts to ensure that the needs of children with neurological impairments are met. System-based efforts such as partnerships between hospitals and families of children with neurological impairments and the rigorous evaluation of care treatment strategies have the potential to promote quality care for children with neurological impairments. However, such efforts will work only if the current health care system is adequately staffed with appropriately educated professionals.
Additional Information
Please access these websites via the online version of this summary at http://dx.doi.org/pmed.1001158.
More information is available about the KID database used in this study
NHS Choices has further information about epilepsy, one of the most common types of neurological impairment examined in this study
Further information is available from PubMed Health about cerebral palsy, another neurological condition acquired during development that was studied in this dataset
doi:10.1371/journal.pmed.1001158
PMCID: PMC3260313  PMID: 22272190
15.  Federating Clinical Data from Six Pediatric Hospitals: Process and Initial Results from the PHIS+ Consortium 
AMIA Annual Symposium Proceedings  2011;2011:994-1003.
Integrating clinical data with administrative data across disparate electronic medical record systems will help improve the internal and external validity of comparative effectiveness research. The Pediatric Health Information System (PHIS) currently collects administrative information from 43 pediatric hospital members of the Child Health Corporation of America (CHCA). Members of the Pediatric Research in Inpatient Settings (PRIS) network have partnered with CHCA and the University of Utah Biomedical Informatics Core to create an enhanced version of PHIS that includes clinical data. A specialized version of a data federation architecture from the University of Utah (“FURTHeR”) is being developed to integrate the clinical data from the member hospitals into a common repository (“PHIS+”) that is joined with the existing administrative data. We report here on our process for the first phase of federating lab data, and present initial results.
PMCID: PMC3243196  PMID: 22195159
16.  Children With Complex Chronic Conditions in Inpatient Hospital Settings in the United States 
Pediatrics  2010;126(4):647-655.
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.
doi:10.1542/peds.2009-3266
PMCID: PMC2962571  PMID: 20855394
child health services; health care delivery/access; health services research; hospitalization; children with special needs
17.  PEDIATRIC HOSPITALISTS AND PRIMARY CARE PROVIDERS: A COMMUNICATION NEEDS ASSESSMENT 
Background/Objective
Existing research on hospitalist-primary care provider (PCP) communication focuses mainly on adult hospitalist models with little known about the quality of current pediatric hospitalist-PCP communication. Our objective was to perform a needs assessment by exploring important issues around communication between pediatric hospitalists and PCP.
Methods
Six previously identified issues around hospitalist-PCP communication from the adult hospitalist literature were abstracted and incorporated into an open and closed-ended questionnaire. The questionnaire was pre-tested, revised, and administered by phone to ten pediatric hospitalists and twelve pediatric PCPs residing in our five-state catchment area. Interviews were transcribed and openly coded, and themes compared using qualitative methods.
Results
The six identified issues were: quality of communication, barriers to communication, methods of information sharing, key data element requirements, critical timing, and perceived benefits. Hospitalists and PCPs rated overall quality of communication from ‘poor’ to ‘very good’. Both groups acknowledge that significant barriers to optimal communication currently exist, yet the barriers differ for each group. Hospitalists and PCPs agree on what information is important to transmit (diagnoses, medications, follow-up needs, pending labs) and critical times for communication during the hospitalization (at discharge, admission, and during major clinical changes). Both groups also agree that optimal communication could improve many aspects of patient care.
Conclusions
Identifying and addressing barriers to these six issues may help both hospitalists and PCPs implement targeted interventions aimed at improving communication. Future studies will need to demonstrate the link between improved hospitalist-PCP communication and improved patient care and outcomes.
doi:10.1002/jhm.456
PMCID: PMC2918252  PMID: 19263485
Communication; Hospitalists; Primary Care Providers; Needs Assessment
18.  How well can hospital readmission be predicted in a cohort of hospitalized children? A retrospective multi-center study 
Pediatrics  2009;123(1):286-293.
Background
Children with complex chronic conditions depend upon both their families and systems of pediatric health care, social services, and financing. Investigations into the workings of this ecology of care would be advanced by more accurate methods of population-level predictions of the likelihood for future hospitalization.
Design
Retrospective cohort study.
Setting
Hospital administrative data collected from 38 children's hospitals in the United States for the years 2003-2005.
Participants
Patients between 2 and 18 years of age discharged from an index hospitalization during 2004.
Main Exposures
Patient characteristics documented during the index hospitalization or any prior hospitalization during the preceding 365 days.
Main Outcome Measures
Readmission to the hospital during the 365 days after discharge from the index admission.
Results
Among the cohort comprised of 186,856 patients discharged from the participating hospitals during 2004, the mean age was 9.2 years, with 54.4% male and 52.9% identified as non-Hispanic white. 17.4% had been admitted during the previous 365 days, and among those discharged alive (0.6% died during the admission), 16.7% were readmitted during the ensuing 365 days. The final readmission model exhibited a C-statistic of 0.81 across all hospitals, with a range from 0.76 to 0.84 for each hospital. Bootstrap-based assessments demonstrated the stability of the final model.
Conclusions
Accurate population-level prediction of hospital readmissions is possible, and the resulting predicted probability of hospital readmission may prove useful for health services research and planning.
doi:10.1542/peds.2007-3395
PMCID: PMC2742316  PMID: 19117894
pediatric; child; chronic conditions; hospital readmission; prediction model; longitudinal observational study
19.  Reflux related hospital admissions after fundoplication in children with neurological impairment: retrospective cohort study 
Objective To examine the impact of fundoplication on reflux related hospital admissions for children with neurological impairment.
Design Retrospective, observational cohort study.
Setting 42 children’s hospitals in the United States.
Participants 3721 children with neurological impairment born between 2000 and 2005 who had at least one hospital admission at a study hospital before their fundoplication.
Intervention Fundoplication.
Main outcome measures Incident rate ratio for reflux related hospital admissions, defined as the post-fundoplication admission rate divided by the pre-fundoplication admission rate.
Results Of the 955 285 children born during the study period, 144 749 (15%) had neurological impairment. Of these, 27 720 (19%) were diagnosed as having gastro-oesophageal reflux disease, of whom 6716 (24%) had a fundoplication. Of these, 3721 (55%) had at least one previous hospital admission and were included in the study cohort. After fundoplication, hospital admissions decreased for any reflux related cause (incident rate ratio 0.69, 95% confidence interval 0.67 to 0.72; P<0.01), aspiration pneumonia (0.71, 0.62 to 0.81; P<0.01), gastro-oesophageal reflux disease (0.60, 0.57 to 0.63; P<0.01), and mechanical ventilation (0.40, 0.37 to 0.43; P<0.01), after adjustment for other patient and hospital related factors that may influence reflux related hospital admissions. Hospital admissions increased for asthma (incident rate ratio 1.52, 1.38 to 1.67; P<0.01) and remained constant for pneumonia (1.07, 0.98 to 1.17; P=0.16).
Conclusions Children with neurological impairment who have fundoplication had reduced short term reflux related hospital admissions for aspiration pneumonia, gastro-oesophageal reflux disease, and mechanical ventilation. However, admissions for pneumonia remained constant and those for asthma increased after fundoplication. Comparative effectiveness data for other treatments (such as gastrojejunal feeding tubes) are unknown.
doi:10.1136/bmj.b4411
PMCID: PMC2779335  PMID: 19923145
20.  Children with chronic complex medical illnesses: Is inpatient care family-centered? 
Background
Families of children with complex chronic medical illnesses (CCMI) benefit from coordinated, family-centered healthcare.
Objective
Compare parental perceptions of inpatient family-centered care for children with CCMI in structured clinical programs (SCPs) with those who are not in SCPs.
Design/Methods
Cross-sectional mail survey of parents of children with CCMIs using the 56-item Measure of Processes of Care (MPOC) to rate perceptions of family-centered healthcare. We compared responses of SCP to non-SCP children.
Results
215 (36.6%) of 588 surveys were returned. Response rates were 40.0% for SCP and 33.8% for non-SCP children. The proportion of favorable (6–7) ratings was higher for the SCP group than for the non-SCP group (52.4% vs. 48.3%, p < 0.035). The proportion of unfavorable ratings was also different (5.4% vs. 12.3%, p =< 0.001). SCP families felt care was directed at the whole child and consistent. Non-SCP families reported more unmet needs and less recognition of their role.
Conclusions
Parents of children with CCMI perceive inpatient care as more family-centered when provided in conjunction with a SCP. Children receiving non-SCP care may benefit from inclusion in SCPs dedicated to their needs. Further studies to determine the best way to provide this care are needed.
PMCID: PMC2749511  PMID: 19779597
Family-centered care; children with complex chronic medical illness; parents perceptions of care; MPOC
21.  Informing the Front Line about Common Respiratory Viral Epidemics 
The nature of clinical medicine is to focus on individuals rather than the populations from which they originate. This orientation can be problematic in the context of acute healthcare delivery during routine winter outbreaks of viral respiratory disease where an individual’s likelihood of viral infection depends on knowledge of local disease incidence. The level of interest in and perceived utility of community and regional infection data for front line clinicians providing acute care is unclear. Based on input from clinicians, we developed an automated analysis and reporting system that delivers pathogen-specific epidemic curves derived from a viral panel that tests for influenza, RSV, adenovirus, parainfluenza and human metapneumovirus. Surveillance summaries were actively e-mailed to clinicians practicing in emergency, urgent and primary care settings and posted on a web site for passive consumption. We demonstrated the feasibility and sustainability of a system that provides both timely and clinically useful surveillance information.
PMCID: PMC2655866  PMID: 18693841

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