BACKGROUND: Neuromuscular/neurologic disease confers increased risk of perioperative mortality in children. Some patients require tracheostomy and/or feeding tubes to ameliorate upper airway obstruction or respiratory failure and reduce aspiration risk. Empiric differences between patients with and without these devices and their association with postoperative mortality have not been previously assessed.

METHODS: This retrospective cohort study using the Pediatric Health Information System measured 3- and 30-day in-hospital postsurgical mortality among children 1 month to 18 years of age with neuromuscular/neurologic disease at 44 US children's hospitals, from April 2016 to October 2018. We summarized differences between patients presenting for surgery with and without these devices using standardized differences. Then, we calculated 3- and 30-day mortality among patients with tracheostomy, feeding tube, both, and neither device, overall and stratified by important exposures, using Fisher exact test to test whether differences were significant.

RESULTS: There were 43,193 eligible patients. Unadjusted 3-day mortality was 1.3% (549/43,193); 30-day mortality was 2.7% (1168/43,193). Most (79.1%) used neither a feeding tube or tracheostomy, 1.2% had tracheostomy only, 15.5% had feeding tube only, and 4.2% used both devices. Compared to children with neither device, children using either or both devices were more likely to have multiple CCCs, dysphagia, chronic pulmonary disease, cerebral palsy, obstructive sleep apnea, or malnutrition, and a prolonged intensive care unit (ICU) stay within the previous year. They were less likely to present for high-risk surgeries (33% vs 57%). Having a feeding tube was associated with decreased 3-day mortality overall compared to having neither device (0.9% vs 1.3%, P = .003), and among children having low-risk surgery, and surgery during urgent or emergent hospitalizations. Having both devices was associated with decreased 3-day mortality among children having low-risk surgery (0.8% vs 1.9%; P = .013), and during urgent or emergent hospitalizations (1.6% vs 2.9%; P = .023). For 30-day mortality, having a feeding tube or both devices was associated with lower mortality when the data were stratified by the number of CCCs.

CONCLUSIONS: Patients requiring tracheostomy, feeding tube, or both are generally sicker than patients without these devices. Despite this, having a feeding tube was associated with lower 3-day mortality overall and lower 30-day mortality when the data were stratified by the number of CCCs. Having both devices was associated with lower 3-day mortality in patients presenting for low-risk surgery, and surgery during urgent or emergent hospitalizations.

BACKGROUND: Neuromuscular/neurologic disease confers increased risk of perioperative mortality in children. Some patients require tracheostomy and/or feeding tubes to ameliorate upper airway obstruction or respiratory failure and reduce aspiration risk. Empiric differences between patients with and without these devices and their association with postoperative mortality have not been previously assessed.

METHODS: This retrospective cohort study using the Pediatric Health Information System measured 3- and 30-day in-hospital postsurgical mortality among children 1 month to 18 years of age with neuromuscular/neurologic disease at 44 US children's hospitals, from April 2016 to October 2018. We summarized differences between patients presenting for surgery with and without these devices using standardized differences. Then, we calculated 3- and 30-day mortality among patients with tracheostomy, feeding tube, both, and neither device, overall and stratified by important exposures, using Fisher exact test to test whether differences were significant.

RESULTS: There were 43,193 eligible patients. Unadjusted 3-day mortality was 1.3% (549/43,193); 30-day mortality was 2.7% (1168/43,193). Most (79.1%) used neither a feeding tube or tracheostomy, 1.2% had tracheostomy only, 15.5% had feeding tube only, and 4.2% used both devices. Compared to children with neither device, children using either or both devices were more likely to have multiple CCCs, dysphagia, chronic pulmonary disease, cerebral palsy, obstructive sleep apnea, or malnutrition, and a prolonged intensive care unit (ICU) stay within the previous year. They were less likely to present for high-risk surgeries (33% vs 57%). Having a feeding tube was associated with decreased 3-day mortality overall compared to having neither device (0.9% vs 1.3%, P = .003), and among children having low-risk surgery, and surgery during urgent or emergent hospitalizations. Having both devices was associated with decreased 3-day mortality among children having low-risk surgery (0.8% vs 1.9%; P = .013), and during urgent or emergent hospitalizations (1.6% vs 2.9%; P = .023). For 30-day mortality, having a feeding tube or both devices was associated with lower mortality when the data were stratified by the number of CCCs.

CONCLUSIONS: Patients requiring tracheostomy, feeding tube, or both are generally sicker than patients without these devices. Despite this, having a feeding tube was associated with lower 3-day mortality overall and lower 30-day mortality when the data were stratified by the number of CCCs. Having both devices was associated with lower 3-day mortality in patients presenting for low-risk surgery, and surgery during urgent or emergent hospitalizations.

OBJECTIVES: To determine across and within hospital differences in the predictors of 365-day admission frequency for diabetic ketoacidosis (DKA) in children at US children's hospitals.

STUDY DESIGN: Multicenter retrospective cohort analysis of 12 449 children 2-18 years of age with a diagnosis of DKA in 42 US children's hospitals between 2004 and 2012. The main outcome of interest was the maximum number of DKA admissions experienced by each child within any 365-day interval during a 5-year follow-up period. The association between patient characteristics and the maximum number of DKA admissions within a 365-day interval was examined across and within hospitals.

RESULTS: In the sample, 28.3% of patients admitted for DKA experienced at least 1 additional DKA admission within the following 365 days. Across hospitals, patient characteristics associated with increasing DKA admission frequency were public insurance (OR 1.97, 95% CI 1.71-2.26), non-Hispanic black race (OR 2.40, 95% CI 2.02-2.85), age ≥12 (OR 1.98, 95% CI 1.7-2.32), female sex (OR 1.41, 95% CI 1.29-1.55), and mental health comorbidity (OR 1.36, 95% CI 1.13-1.62). Within hospitals, non-Hispanic black race was associated with higher odds of 365-day admission in 59% of hospitals, and public insurance was associated with higher odds in 56% of hospitals. Older age, female sex, and mental health comorbidity were associated with higher odds of 365-day admission in 42%, 29%, and 15% of hospitals, respectively.

CONCLUSIONS: Across children's hospitals, certain patient characteristics are associated with more frequent DKA admissions. However, these factors are not associated with increased DKA admission frequency for all hospitals.

<p><strong>CONTEXT: </strong>Prospective cohort studies of individuals with serious illness and their family members, such as children receiving palliative care and their parents, pose challenges regarding data management.</p>

<p><strong>OBJECTIVE: </strong>To describe the design and lessons learned regarding the data management system for the Pediatric Palliative Care Research Network's SHAred Data and REsearch (SHARE) project, a multicenter prospective cohort study of children receiving pediatric palliative care (PPC) and their parents, and to describe important attributes of this system, with specific considerations for the design of future studies.</p>

<p><strong>METHODS: </strong>The SHARE study consists of 643 PPC patients and up to two of their parents who enrolled from April 2017 to December 2020 at 7 children's hospitals across the United States. Data regarding demographics, patient symptoms, goals of care, and other characteristics were collected directly from parents or patients at 6 timepoints over a 24-month follow-up period and stored electronically in a centralized location. Using medical record numbers, primary collected data was linked to administrative hospitalization data containing diagnostic and procedure codes and other data elements. Important attributes of the data infrastructure include linkage of primary and administrative data; centralized availability of multilingual questionnaires; electronic data collection and storage system; time-stamping of instrument completion; and a separate but connected study administrative database used to track enrollment.</p>

<p><strong>CONCLUSIONS: </strong>Investigators planning future multicenter prospective cohort studies can consider attributes of the data infrastructure we describe when designing their data management system.</p>

<p><strong>OBJECTIVES: </strong>To characterize patterns of surgery among pediatric patients during terminal hospitalizations in children's hospitals.</p>

<p><strong>METHODS: </strong>We reviewed patients ≤20 years of age who died among 4 424 886 hospitalizations from January 2013-December 2019 within 49 US children's hospitals in the Pediatric Health Information System database. Surgical procedures, identified by International Classification of Diseases procedure codes, were classified by type and purpose. Descriptive statistics characterized procedures, and hypothesis testing determined if undergoing surgery varied by patient age, race and ethnicity, or the presence of chronic complex conditions (CCCs).</p>

<p><strong>RESULTS: </strong>Among 33 693 terminal hospitalizations, the majority (n = 30 440, 90.3%) of children were admitted for nontraumatic causes. Of these children, 15 142 (49.7%) underwent surgery during the hospitalization, with the percentage declining over time (P &lt; .001). When surgical procedures were classified according to likely purpose, the most common were to insert or address hardware or catheters (31%), explore or aid in diagnosis (14%), attempt to rescue patient from mortality (13%), or obtain a biopsy (13%). Specific CCC types were associated with undergoing surgery. Surgery during terminal hospitalization was less likely among Hispanic children (47.8%; P &lt; .001), increasingly less likely as patient age increased, and more so for Black, Asian American, and Hispanic patients compared with white patients (P &lt; .001).</p>

<p><strong>CONCLUSIONS: </strong>Nearly half of children undergo surgery during their terminal hospitalization, and accordingly, pediatric surgical care is an important aspect of end-of-life care in hospital settings. Differences observed across race and ethnicity categories of patients may reflect different preferences for and access to nonhospital-based palliative, hospice, and end-of-life care.</p>

<p><strong>CONTEXT: </strong>Parents of patients with a serious illness experience psychological distress, which impacts parents' wellbeing and, potentially, their ability to care for their children. Parent psychological distress may be influenced by children's symptom burden and by families' financial difficulty.</p>

<p><strong>OBJECTIVES: </strong>This study examined the associations among parent psychological distress, parent-reported patient symptoms, and financial difficulty, seeking to determine the relative association of financial difficulty and of patient symptoms to parent psychological distress.</p>

<p><strong>METHODS: </strong>Cross-sectional study of baseline data for 601 parents of 532 pediatric palliative care patients enrolled in a prospective cohort study conducted at seven US children's hospitals. Data included self-reported parent psychological distress and parent report of child's symptoms and family financial difficulty. We used ordinary least squares multiple regressions to examine the association between psychological distress and symptom score, between psychological distress and financial difficulty, and whether the degree of financial difficulty modified the relationship between psychological distress and symptom score.</p>

<p><strong>RESULTS: </strong>The majority of parents were moderately distressed (52%) or severely distressed (17%) and experienced some degree of financial difficulty (65%). While children's symptom scores and family financial difficulty together explained more of the variance in parental psychological distress than either variable alone, parental distress was associated more strongly, and to a larger degree, with financial difficulty than with symptom scores alone.</p>

<p><strong>CONCLUSIONS: </strong>Parent psychological distress was associated with parent-reported patient symptoms and financial difficulty. Future work should examine these relationships longitudinally, and whether interventions to improve symptom management and ameliorate financial difficulties improve parental outcomes.</p>

<p><strong>Importance: </strong>Pediatric palliative care treats patients with a wide variety of advanced illness conditions, often with substantial levels of pain and other symptoms. Clinical and research advancements regarding symptom management for these patients are hampered by the scarcity of data on symptoms as well as an overreliance on clinician report.</p>

<p><strong>Objective: </strong>To provide a detailed description of the symptoms among patients receiving pediatric palliative care based on parental report via a validated, structured symptom assessment measure.</p>

<p><strong>Design, Setting, and Participants: </strong>Baseline data for this cross-sectional analysis were collected between April 10, 2017, and February 5, 2020, from pediatric palliative care programs in 7 children's hospitals located in Akron, Ohio; Boston, Massachusetts; Birmingham, Alabama; Houston, Texas; Minneapolis, Minnesota; Philadelphia, Pennsylvania; and Seattle, Washington. Data were collected in the hospital, outpatient, and home setting from patients 30 years of age or younger who were receiving pediatric palliative care at 1 of the study sites.</p>

<p><strong>Exposures: </strong>Analyses were stratified by patients' demographic characteristics, including age, and by whether the patients had received a diagnosis of any of 10 non-mutually exclusive complex chronic condition categories.</p>

<p><strong>Main Outcomes and Measures: </strong>Twenty symptoms measured via the modified Memorial Symptom Assessment Scale, which scores the frequency and severity of any symptom that is present and provides a total symptom score.</p>

<p><strong>Results: </strong>Among the first 501 patients enrolled, the median age was 4.1 years (interquartile range, 0.8-12.9 years), 267 (53.3%) were male, and 356 (71.1%) were White. The most prevalent complex chronic conditions included gastrointestinal (357 [71.3%]), neurologic (289 [57.7%]), and cardiovascular (310 [61.9%]) conditions; 438 patients (87.4%) were technology dependent. Parents reported a mean (SD) of 6.7 (3.4) symptoms per patient and a median of 7 symptoms (interquartile range, 4-9 symptoms). A total of 367 patients (73.3%) had 5 or more symptoms. The 5 most prevalent symptoms were pain (319 [63.7%]; 95% CI, 59.4%-67.8%), lack of energy (295 [58.9%]; 95% CI, 54.5%-63.1%), irritability (280 [55.9%]; 95% CI, 51.5%-60.2%), drowsiness (247 [49.3%]; 95% CI, 44.9%-53.7%), and shortness of breath (232 [46.3%]; 95% CI, 41.9%-50.7%). Although older patients were reported by parents as having experienced more symptoms and having higher total symptom scores, variation across condition categories was relatively minor. Patients in the upper 10th percentile of total symptom scores had a median of 12.0 symptoms (interquartile range, 11-13).</p>

<p><strong>Conclusions and Relevance: </strong>In this cross-sectional study, most children receiving palliative care were experiencing polysymptomatology. An important subgroup of patients frequently experienced numerous severe symptoms. Assessment and management of patients with polysymptomatology are critical aspects of pediatric palliative care.</p>

<p><strong>Importance: </strong>Identifying high priority pediatric conditions is important for setting a research agenda in hospital pediatrics that will benefit families, clinicians, and the health care system. However, the last such prioritization study was conducted more than a decade ago and used International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM) codes.</p>

<p><strong>Objectives: </strong>To identify conditions that should be prioritized for comparative effectiveness research based on prevalence, cost, and variation in cost of hospitalizations using contemporary data at US children's hospitals.</p>

<p><strong>Design, Setting, and Participants: </strong>This retrospective cohort study of children with hospital encounters used data from the Pediatric Health Information System database. Children younger than 18 years with inpatient hospital encounters at 45 tertiary care US children's hospitals between January 1, 2016, and December 31, 2019, were included. Data were analyzed from March 2020 to April 2021.</p>

<p><strong>Main Outcomes and Measures: </strong>The condition-specific prevalence and total standardized cost, the corresponding prevalence and cost ranks, and the variation in standardized cost per encounter across hospitals were analyzed. The variation in cost was assessed using the number of outlier hospitals and intraclass correlation coefficient.</p>

<p><strong>Results: </strong>There were 2 882 490 inpatient hospital encounters (median [interquartile range] age, 4 [1-12] years; 1 554 024 [53.9%] boys) included. Among the 50 most prevalent and 50 most costly conditions (total, 74 conditions), 49 (66.2%) were medical, 15 (20.3%) were surgical, and 10 (13.5%) were medical/surgical. The top 10 conditions by cost accounted for $12.4 billion of $33.4 billion total costs (37.4%) and 592 815 encounters (33.8% of all encounters). Of 74 conditions, 4 conditions had an intraclass correlation coefficient (ICC) of 0.30 or higher (ie, major depressive disorder: ICC, 0.49; type 1 diabetes with complications: ICC, 0.36; diabetic ketoacidosis: ICC, 0.33; acute appendicitis without peritonitis: ICC, 0.30), and 9 conditions had an ICC higher than 0.20 (scoliosis: ICC, 0.27; hypertrophy of tonsils and adenoids: ICC, 0.26; supracondylar fracture of humerus: ICC, 0.25; cleft lip and palate: ICC, 0.24; acute appendicitis with peritonitis: ICC, 0.21). Examples of conditions high in prevalence, cost, and variation in cost included major depressive disorder (cost rank, 19; prevalence rank, 10; ICC, 0.49), scoliosis (cost rank, 6; prevalence rank, 38; ICC, 0.27), acute appendicitis with peritonitis (cost rank, 13; prevalence rank, 11; ICC, 0.21), asthma (cost rank, 10; prevalence rank, 2; ICC, 0.17), and dehydration (cost rank, 24; prevalence rank, 8; ICC, 0.18).</p>

<p><strong>Conclusions and Relevance: </strong>This cohort study found that major depressive disorder, scoliosis, acute appendicitis with peritonitis, asthma, and dehydration were high in prevalence, costs, and variation in cost. These results could help identify where future comparative effectiveness research in hospital pediatrics should be targeted to improve the care and outcomes of hospitalized children.</p>

<p><strong>BACKGROUND: </strong>Use of intravenous magnesium (IVMg) for childhood asthma exacerbations has increased significantly in the last decade. Emergency department administration of IVMg has been shown to reduce asthma hospitalization, yet most children receiving IVMg in the emergency department are subsequently hospitalized. Our objective with the study was to examine hospital outcomes of children given IVMg for asthma exacerbations.</p>

<p><strong>METHODS: </strong>We conducted a retrospective cohort study using data from the Pediatric Health Information System. We used propensity score matching to compare children who received IVMg on the first day of hospitalization with those who did not. Primary outcomes were initiation and duration of noninvasive positive pressure ventilation. Secondary outcomes included mechanical ventilation (MV) initiation, duration of MV, length of stay, and subsequent tertiary medication use. Primary analysis was restricted to children admitted to nonintensive care inpatient units.</p>

<p><strong>RESULTS: </strong>Overall, 91 309 hospitalizations met inclusion criteria. IVMg was administered in 25 882 (28.4%) children. After propensity score matching, IVMg was not significantly associated with lower initiation (adjusted odds ratio 0.88; 95% confidence interval [CI] 0.74-1.05) or shorter duration of noninvasive positive pressure ventilation (rate ratio 0.94; 95% CI 0.87-1.02). Similarly, no significant associations were seen for MV initiation, MV duration, or length of stay. IVMg was associated with lower subsequent tertiary medication use (adjusted odds ratio 0.66; 95% CI 0.60-0.72). However, the association was lost when ipratropium was removed from the tertiary medication definition.</p>

<p><strong>CONCLUSIONS: </strong>IVMg administration was not significantly associated with improved hospital outcomes. Further study is needed to inform the optimal indications and timing of magnesium use during hospitalization.</p>

<p>Intravenous (IV) magnesium is used as an adjunct therapy in management of status asthmaticus with a goal of reducing intubation rate. A recent review suggests that IV magnesium use in status asthmaticus reduces admission rates. This is contrary to the observation of practicing emergency room physicians. The goal of this study was to assess trends in IV magnesium use for status asthmaticus in US children's hospitals over 8 years through a retrospective analysis of children younger than 18 years using the Pediatric Health Information System database. Outcomes were IV magnesium use, inpatient and intensive care unit admission rate, geometric mean length of stay, and 7-day all-cause readmission rate. IV magnesium use for asthma hospitalization more than doubled over 8 years (17% vs. 36%; P &lt; .001). Yearly trends were not significantly associated with hospital or intensive care unit admission rate or 7-day all-cause readmissions, although length of stay was reduced (P &lt; .001).</p>