The Importance of Engaging Children in Research Decision-Making: A Preliminary Mixed-Methods Study.

Studies demonstrate deficiencies in parents' and children's comprehension of research and lack of child engagement in research decision-making. We conducted a cross-sectional and interview-based study of 31 parent-child dyads to describe decision-making preferences, experiences, and comprehension of parents and children participating in research. Parents and children reported that parents played a greater role in decisions about research participation than either parents or children preferred. The likelihood of child participation was associated with the extent of input the parent permitted the child to have in the decision-making process, the child's comprehension, whether the study team asked the child about participation, whether the child read study-related materials, the parent's marital status, and the child's race. Children had lower comprehension than adults. Comprehension was related to age, education, verbal intelligence, and reading of study-related information. Parent understanding was associated with prospect for benefit and illness severity. Child participation may be improved by increasing parent-child communication, emphasizing important relational roles between parent and child, respecting the developing autonomy of the child, increasing engagement with the study team, providing appropriate reading materials, and assessing comprehension.

Fluid Balance Is Associated with Clinical Outcomes and Extravascular Lung Water in Children with Acute Asthma Exacerbation.

RATIONALE: The effects of fluid administration during acute asthma exacerbation are likely unique in this patient population: highly negative inspiratory intrapleural pressure resulting from increased airway resistance may interact with excess fluid administration to favor the accumulation of extravascular lung water, leading to worse clinical outcomes. OBJECTIVES: Investigate how fluid balance influences clinical outcomes in children hospitalized for asthma exacerbation. METHODS: We analyzed the association between fluid overload and clinical outcomes in a retrospective cohort of children admitted to an urban children's hospital with acute asthma exacerbation. These findings were validated in two cohorts: a matched retrospective and a prospective observational cohort. Finally, ultrasound imaging was used to identify extravascular lung water and investigate the physiological basis for the inferential findings. MEASUREMENTS AND MAIN RESULTS: In the retrospective cohort, peak fluid overload [(fluid input - output)/weight] is associated with longer hospital length of stay, longer treatment duration, and increased risk of supplemental oxygen use (P values < 0.001). Similar results were obtained in the validation cohorts. There was a strong interaction between fluid balance and intrapleural pressure: the combination of positive fluid balance and highly negative inspiratory intrapleural pressures is associated with signs of increased extravascular lung water (P < 0.001), longer length of stay (P = 0.01), longer treatment duration (P = 0.03), and increased risk of supplemental oxygen use (P = 0.02). CONCLUSIONS: Excess volume administration leading to fluid overload in children with acute asthma exacerbation is associated with increased extravascular lung water and worse clinical outcomes.

Energy and Protein Delivery in Overweight and Obese Children in the Pediatric Intensive Care Unit.

BACKGROUND: Early and optimal energy and protein delivery have been associated with improved clinical outcomes in the pediatric intensive care unit (PICU). Overweight and obese children in the PICU may be at risk for suboptimal macronutrient delivery; we aimed to describe macronutrient delivery in this cohort. METHODS: We performed a retrospective study of PICU patients ages 2-21 years, with body mass index (BMI) ≥85th percentile and >48 hours stay. Nutrition variables were extracted regarding nutrition screening and assessment, energy and protein prescription, and delivery. RESULTS: Data from 83 patient encounters for 52 eligible patients (52% male; median age 9.6 [5-15] years) were included. The study cohort had a longer median PICU length of stay (8 vs 5 days, P < .0001) and increased mortality rate (6/83 vs 182/5572, P = .045) than concurrent PICU patient encounters. Detailed nutrition assessment was documented for 60% (50/83) of patient encounters. Energy expenditure was estimated primarily by predictive equations. Stress factor >1.0 was applied in 44% (22/50). Median energy delivered as a percentage of estimated requirements by the Schofield equation was 34.6% on day 3. Median protein delivered as a percentage of recommended intake was 22.1% on day 3. CONCLUSIONS: The study cohort had suboptimal nutrition assessments and macronutrient delivery during their PICU course. Mortality and duration of PICU stay were greater when compared with the general PICU population. Nutrition assessment, indirect calorimetry-guided energy prescriptions, and optimizing the delivery of energy and protein must be emphasized in this cohort. The impact of these practices on clinical outcomes must be investigated.

Gastric Emptying in Critically Ill Children.

BACKGROUND: Delayed gastric emptying (GE) impedes enteral nutrient (EN) delivery in critically ill children. We examined the correlation between (a) bedside EN intolerance assessments, including gastric residual volume (GRV); (b) delayed GE; and (c) delayed EN advancement. MATERIALS AND METHODS: We prospectively enrolled patients ≥1 year of age, eligible for gastric EN and without contraindications to acetaminophen. Gastric emptying was determined by the acetaminophen absorption test, specifically the area under the curve at 60 minutes (AUC60). Slow EN advancement was defined as delivery of <50% of the prescribed EN 48 hours after study initiation. EN intolerance assessments (GRV, abdominal distension, emesis, loose stools, abdominal discomfort) were recorded. RESULTS: We enrolled 20 patients, median 11 years (4.4-15.5), 50% male. Sixteen (80%) patients had delayed GE (AUC60 <600 mcg·min/mL) and 7 (35%) had slow EN advancement. Median GRV (mL/kg) for patients with delayed vs normal GE was 0.43 (0.113-2.188) vs 0.89 (0.06-1.91), P = .9635. Patients with slow vs rapid EN advancement had median GRV (mL/kg) of 1.02 mL/kg (0.20-3.20) vs 0.27 mL/kg (0.06-1.62), P = .3114, and frequency of altered EN intolerance assessments of 3/7 (42.9%) vs 5/13 (38.5%), P = 1. Median AUC60 for patients with slow vs rapid EN advancement was 91.74 mcg·min/mL (53.52-143.1) vs 449.5 mcg·min/mL (173.2-786.5), P = .0012. CONCLUSIONS: A majority of our study cohort had delayed GE. Bedside EN intolerance assessments, particularly GRV, did not predict delayed GE or rate of EN advancement. Delayed gastric emptying predicted slow EN advancement. Novel tests for delayed GE and EN intolerance are needed.

Long-Gap Esophageal Atresia Is a Unique Entity within the Esophageal Atresia Defect Spectrum.

BACKGROUND: Long-gap esophageal atresia (LGEA) may have clinical and syndromic presentations different from those of esophageal atresia (EA) that affects shorter segments of the esophagus (non-LGEA). This may suggest unique underlying developmental mechanisms. OBJECTIVES: We sought to characterize clinical differences between LGEA and non-LGEA by carefully phenotyping a cohort of EA patients, and furthermore to assess molecular genetic findings in a subset of them. METHODS: This is a retrospective cohort study to systematically evaluate clinical and genetic findings in EA infants who presented at our institution over a period of 10 years (2005-2015). RESULTS: Two hundred twenty-nine EA patients were identified, 69 (30%) of whom had LGEA. Tracheoesophageal fistula was present in most non-LGEA patients (158 of 160) but in only 30% of LGEA patients. The VACTERL association was more commonly seen with non-LGEA compared to LGEA (70 vs. 25%; p < 0.001). Further, trisomy 21 was more common in LGEA than in non-LGEA. 25% of LGEA patients had an isolated EA diagnosis without other anomalies, compared to <1% for non-LGEA. Chromosomal microarray analysis showed copy number variations (CNV) in 4 of 39 non-LGEA patients and 0 of 3 LGEA patients. A review of the ClinGen database showed that none of those CNV have been previously described with EA. CONCLUSIONS: LGEA represents a unique type of EA. Compared to non-LGEA, it is more likely to be an isolated defect and associated with trisomy 21. Further, it is less commonly seen with VACTERL anomalies. Our findings suggest the involvement of unique pathways that may be distinct from those causing non-LGEA.

Efficacy of the Modified Broström Procedure for Adolescent Patients With Chronic Lateral Ankle Instability.

BACKGROUND AND PURPOSE: Lateral ankle sprains are very common, representing up to 30% of sports-related injuries. The anterior talofibular ligament (ATFL) and less commonly the calcaneofibular ligament (CFL) are injured. Surgical treatment is reserved for injuries that fail nonoperative treatment with recurrent instability. Anatomic repair using the modified Broström technique has been shown to have good clinical outcomes in the adult population. The purpose of this study was to report on the outcomes of the modified Broström technique in the pediatric and adolescent population (under 18 y old) for chronic lateral ankle instability. METHODS: Thirty-one patients over an 8-year period were included in the current study after excluding for congenital malformation or underlying connective tissue disease. All patients were treated with a modified Broström technique in which the ATFL was repaired anatomically. Twenty-four patients (77%) underwent concomitant arthroscopy for intra-articular pathology. Demographic, surgical, and clinical data were collected and outcome scores were obtained, including the Marx activity scale, University of California, Los Angeles (UCLA) activity score, and modified American Orthopedic Foot and Ankle Society (AOFAS) score. RESULTS: Mean time from initial injury to surgery averaged 27 months with an overall mean clinical postoperative follow-up of 36 months. Of the 24 patients who underwent concomitant arthroscopy, all had thickening of Bassett ligament and 3 (12.5%) had cartilage lesions. Postoperatively, the mean Marx activity score was 9.9±4.7, mean UCLA score was 9.3±1.3, and mean modified AOFAS score was 83.8±11.7. 71% (22 of 31) of patients achieved good-to-excellent results (as defined by a modified AOFAS score of 80 or greater). Two patients had superficial wound infections; no other complications were experienced in this cohort. CONCLUSIONS: Lateral ankle sprains are common injuries that can frequently be treated nonoperatively; chronic instability may result despite appropriate therapy. Surgical treatment with anatomic repair of the ATFL and CFL using the modified Broström technique in pediatric and adolescent patients results in improved stability, low complication rate, and good clinical outcome scores. LEVEL OF EVIDENCE: Level IV-prognostic retrospective case series.

Validation of a Pediatric Early Warning Score in Hospitalized Pediatric Oncology and Hematopoietic Stem Cell Transplant Patients.

OBJECTIVES: To evaluate the correlation of a Pediatric Early Warning Score with unplanned transfer to the PICU in hospitalized oncology and hematopoietic stem cell transplant patients. DESIGN: We performed a retrospective matched case-control study, comparing the highest documented Pediatric Early Warning Score within 24 hours prior to unplanned PICU transfers in hospitalized pediatric oncology and hematopoietic stem cell transplant patients between September 2011 and December 2013. Controls were patients who remained on the inpatient unit and were matched 2:1 using age, condition (oncology vs hematopoietic stem cell transplant), and length of hospital stay. Pediatric Early Warning Scores were documented by nursing staff at least every 4 hours as part of routine care. Need for transfer was determined by a PICU physician called to evaluate the patient. SETTING: A large tertiary/quaternary free-standing academic children's hospital. PATIENTS: One hundred ten hospitalized pediatric oncology patients (42 oncology, 68 hematopoietic stem cell transplant) requiring unplanned PICU transfer and 220 matched controls. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Using the highest score in the 24 hours prior to transfer for cases and a matched time period for controls, the Pediatric Early Warning Score was highly correlated with the need for PICU transfer overall (area under the receiver operating characteristic = 0.96), and in the oncology and hematopoietic stem cell transplant groups individually (area under the receiver operating characteristic = 0.95 and 0.96, respectively). The difference in Pediatric Early Warning Score results between the cases and controls was noted as early as 24 hours prior to PICU admission. Seventeen patients died (15.4%). Patients with higher Pediatric Early Warning Scores prior to transfer had increased PICU mortality (p = 0.028) and length of stay (p = 0.004). CONCLUSIONS: We demonstrate that our institution's Pediatric Early Warning Score is highly correlated with the need for unplanned PICU transfer in hospitalized oncology and hematopoietic stem cell transplant patients. Furthermore, we found an association between higher scores and PICU mortality. This is the first validation of a Pediatric Early Warning Score specific to the pediatric oncology and hematopoietic stem cell transplant populations, and supports the use of Pediatric Early Warning Scores as a method of early identification of clinical deterioration in this high-risk population.

A stepwise enteral nutrition algorithm for critically ill children helps achieve nutrient delivery goals*.

OBJECTIVES: To evaluate the impact of implementing an enteral nutrition algorithm on achieving optimal enteral nutrition delivery in the PICU. DESIGN: Prospective pre/post implementation audit of enteral nutrition practices. SETTING: One 29-bed medical/surgical PICU in a freestanding, university-affiliated children's hospital. PATIENTS: Consecutive patients admitted to the PICU over two 4-week periods pre and post implementation, with a stay of more than 24 hours who received enteral nutrition. INTERVENTIONS: Based on the results of our previous study, we developed and systematically implemented a stepwise, evidence and consensus-based algorithm for initiating, advancing, and maintaining enteral nutrition in critically ill children. Three months after implementation, we prospectively recorded clinical characteristics, nutrient delivery, enteral nutrition interruptions, parenteral nutrition use, and ability to reach energy goal in eligible children over a 4-week period. Clinical and nutritional variables were compared between the pre and postintervention cohorts. Time to achieving energy goal was analyzed using Kaplan-Meier statistical analysis. MEASUREMENTS AND MAIN RESULTS: Eighty patients were eligible for this study and were compared to a cohort of 80 patients in the preimplementation audit. There were no significant differences in median age, gender, need for mechanical ventilation, time to initiating enteral nutrition, or use of postpyloric feeding between the two cohorts. We recorded a significant decrease in the number of avoidable episodes of enteral nutrition interruption (3 vs 51, p < 0.0001) and the prevalence and duration of parenteral nutrition dependence in patients with avoidable enteral nutrition interruptions in the postintervention cohort. Median time to reach energy goal decreased from 4 days to 1 day (p < 0.0001), with a higher proportion of patients reaching this goal (99% vs 61%, p = 0.01). CONCLUSIONS: The implementation of an enteral nutrition algorithm significantly improved enteral nutrition delivery and decreased reliance on parenteral nutrition in critically ill children. Energy intake goal was reached earlier in a higher proportion of patients.