Jennifer Faerber

Parental decision-making preferences in the pediatric intensive care unit.

Objective: To assess parental decision-making preferences in the high-stress environment of the pediatric intensive care unit and test whether preferences vary with demographics, complex chronic conditions, prior admissions to the pediatric intensive care unit, and parental positive and negative emotional affect. Design: Institutional Review Board–approved prospective cohort study conducted between December 2009 and April 2010. Setting: Pediatric intensive care unit at The Children’s Hospital of Philadelphia. Participants: Eighty-seven English-speaking parents of 75 children either <18 yrs of age or cognitively incapable of making their own decisions and who were hospitalized in the pediatric intensive care unit for >72 hrs. Interventions: Parents were interviewed in person and completed standardized instruments that assessed decision-making preferences and parental affect. Measurements and Main Results: The majority of parents in the analytic sample preferred shared decision making with their doctors (40.0%) or making the final decision/mostly making the final decision on their own (41.0%). None of the child and parent characteristics in the analytic sample were found to be significantly associated with the top decision-making preference. Using shared decision making as a reference category, we determined whether positive or negative affect scores were associated with preferring other decision-making options. We found that parents with higher positive affect were less likely to prefer self/mostly self (autonomous decision making). Increased positive affect was also associated with a reduced likelihood of preferring doctor/mostly doctor (delegating the decision), but not to a significant degree. Conclusions: Most parents in the pediatric intensive care unit prefer their role in decision making to be shared with their doctor or to have significant autonomy in the final decision. A sizeable minority, however, prefer decision-making delegation. Parental emotional affect has an association with decision-making preference.

Red blood cell transfusion is associated with infection and extracerebral complications after subarachnoid hemorrhage.

OBJECTIVERed blood cell transfusion (RBCT) is associated with medical complications in general medical and surgical patients. We examined the hypothesis that RBCT during intensive care unit (ICU) care is associated with medical complications after subarachnoid hemorrhage (SAH). METHODSWe retrospectively analyzed a prospective observational database containing 421 patients with SAH (mean age, 51.5 years; standard deviation, 14.6 years). Logistic regression models were used to adjust for age, admission hemoglobin (Hgb), clinical grade, average ICU Hgb, and symptomatic vasospasm. RESULTSTwo hundred fourteen patients received an RBCT during their ICU stay. Medical complications were identified in 156 patients and were more common in those who received blood (46%) than in those who did not (29.8%) (P < .001). Major medical complications (cardiac, pulmonary, renal, or hepatic) occurred in 111 patients, and minor complications (eg, skin rash, deep vein thrombosis) occurred in 45 patients. Any non–central nervous system infection (n = 183; P < .001), including pneumonia (n = 103; P < .001) or septicemia (n = 36; P = .02), was more common with RBCT. Central nervous system infections (meningitis, cranial wound, n = 15) also were associated with RBCT (P = .03). Mechanically ventilated patients (n = 259) were more likely to have received an RBCT than those who did not (P < .001). When logistic regression was used to control for age, admission clinical grade and Hgb, average ICU Hgb, symptomatic vasospasm, and other admission variables associated with outcome, the following factors (odds ratio; 95% confidence interval) were associated with RBCT: any medical complication (1.8; 1.1–3.0), major medical complications (2.1; 1.2–3.7), any infection (2.8; 1.7–4.5), pneumonia (2.6; 1.5–4.7), septicemia (2.9; 1.2–6.8), and need for mechanical ventilation (2.8; 1.5–5.1). CONCLUSIONThese data suggest that RBCTs are associated with medical complications after SAH. However, the data do not infer causation, and further study is necessary to better define the indications for transfusion after SAH.

Childhood Asthma Hospital Discharge Medication Fills and Risk of Subsequent Readmission

OBJECTIVE To assess the relationship between posthospitalization prescription fills for recommended asthma discharge medication classes and subsequent hospital readmission. STUDY DESIGN This was a retrospective cohort analysis of Medicaid Analytic Extract files from 12 geographically diverse states from 2005-2007. We linked inpatient hospitalization, outpatient, and prescription claims records for children ages 2-18 years with an index hospitalization for asthma to identify those who filled a short-acting beta agonist, oral corticosteroid, or inhaled corticosteroid within 3 days of discharge. We used a multivariable extended Cox model to investigate the association of recommended medication fills and hospital readmission within 90 days. RESULTS Of 31,658 children hospitalized, 55% filled a beta agonist prescription, 57% an oral steroid, and 37% an inhaled steroid. Readmission occurred for 1.3% of patients by 14 days and 6.3% by 90 days. Adjusting for patient and billing provider factors, beta agonist (hazard ratio [HR] 0.67, 95% CI 0.51, 0.87) and inhaled steroid (HR 0.59, 95% CI 0.42, 0.85) fill were associated with a reduction in readmission at 14 days. Between 15 and 90 days, inhaled steroid fill was associated with decreased readmission (HR 0.87, 95% CI 0.77, 0.98). Patients who filled all 3 medications had the lowest readmission hazard within both intervals. CONCLUSIONS Filling of beta agonists and inhaled steroids was associated with diminished hazard of early readmission. For inhaled steroids, this effect persisted up to 90 days. Efforts to improve discharge care for asthma should include enhancing recommended discharge medication fill rates.

Long-term survival after the Fontan operation: Twenty years of experience at a single center

Objective: Existing studies of patients palliated with the Fontan operation are limited by heterogeneous patient populations and incomplete follow‐up. This study aimed to describe long‐term post‐Fontan survival in a modern patient cohort. Methods: All 773 patients who underwent a first Fontan operation at our institution between 1992 and 2009 were reviewed. The primary outcome was the composite endpoint of Fontan takedown, heart transplantation, or death before 2013. Results: Follow‐up rate was 99.2%. Survival with intact Fontan circulation was 94% at 1 year (95% confidence interval [95% CI], 92%‐95%), 90% at 10 years (95% CI, 88%‐92%), 85% at 15 years (95% CI, 82%‐88%), and 74% at 20 years (95% CI, 67%‐80%). Distinct risk factors were identified for early (≤1 year) and late composite outcomes. Independent risk factors for early outcome included prolonged pleural drainage (hazard ratio [HR], 4.4; P < .001), intensive care unit stay >1 week (HR, 2.4; P < .001), Fontan before 1997 (HR, 3.3; P < .001), preoperative atrioventricular valve regurgitation (HR, 2.0; P < .001), and longer crossclamp time (HR, 1.3 per 10 minutes; P < .001). Late outcome was predicted by atrioventricular valve regurgitation prior to Fontan (HR, 2.0; P ≤ .001), and post‐Fontan ICU stay >1 week (HR, 2.4; P < .001). Conclusions: Long‐term mortality after Fontan operation remains substantial. Risk factors for death or loss of Fontan circulation differ between the early and late postoperative periods. Long‐term survival has not improved appreciably over the last decade, suggesting that alternatives to the Fontan are warranted.

Pediatric Mortality in Males Versus Females in the United States, 1999–2008

OBJECTIVE: To evaluate whether differences between pediatric male and female mortality are due to differences in specific age ranges, specific disease categories, or differences in the risk of developing specific conditions versus the risk of dying once having developed the condition. METHODS: Using 1999–2008 mortality data for all deaths of individuals <20 years of age from the Centers for Disease Control and Prevention’s WONDER database, we calculated male-to-female relative risks (RRs), standardized to the 2000 US Census, by age and International Classification of Diseases, 10th revision (ICD-10), chapters. By using the Centers for Disease Control and Prevention’s record of linked birth and infant death records between 1999 and 2007, we also calculated male-to-female RRs stratified by gestational age; and by using Surveillance, Epidemiology, and End Results cancer registries for 1999–2008, we calculated incidence and mortality RRs for the 7 leading types of cancer. RESULTS: Males experience higher mortality rates in all age groups from birth to age 20 years (RR: 1.44; 95% confidence interval [CI]: 1.44–1.45) and among infant deaths in nearly all weekly gestational age strata (RR: 1.12; 95% CI: 1.11–1.12). Stratified by ICD-10 major disease categories, males experience higher mortality rates in 17 of 19 categories. For the 7 types of pediatric cancers, the overall pattern was similarly greater male incidence (RR: 1.13; 95% CI: 1.12–1.14), fatality rate (RR: 1.10; 95% CI: 1.07–1.13), and overall mortality (RR: 1.21; 1.18–1.25). CONCLUSIONS: Under 20 years of age, males die more than females from a wide array of underlying conditions. The potential genetic and hormonal mechanisms for the mortality difference between males and females warrant investigation.

Problems and hopes perceived by mothers, fathers and physicians of children receiving palliative care

The quality of shared decision making for children with serious illness may depend on whether parents and physicians share similar perceptions of problems and hopes for the child.

Variation of Opioid Use in Pediatric Inpatients Across Hospitals in the U.S.

CONTEXT Appropriate use of opioids is essential to manage moderate-to-severe pain in children safely and effectively, yet published guidance regarding opioid treatment for pediatric patients is limited, potentially resulting in excessive variation in opioid use in pediatric patients across hospitals in the U.S. OBJECTIVES The aim was to evaluate hospital variation in opioid use in pediatric inpatients. METHODS Using data from the Pediatric Health Information System and the Premier Perspective Database regarding all pediatric inpatients in 626 hospitals, we examined hospital variation in opioid use and the length of opioid use, adjusting for patient demographic and clinical characteristics and for hospital type (childrens vs. general) and hospital patient volume, using multilevel generalized linear regression modeling. RESULTS Overall, 41.2% of all pediatric hospitalizations were exposed to opioids. Among the exposed patients, the mean length of exposure was 4.6 days. Exposure proportion and exposure length varied substantially across hospitals, even after accounting for patient demographic and clinical characteristics, hospital type and hospital patient volume, especially among terminal hospitalizations. For patients discharged alive vs. died, the adjusted exposure percentage for each hospital ranged from 0.7% to 99.1% (interquartile range [IQR]: 35.3%-59.9%) vs. 0.1% to 100.0% (IQR: 29.2%-66.2%), respectively, and the adjusted exposure length ranged from 1.0 to 8.4 days (IQR: 2.2-2.7 days) vs. 0.9 to 35.2 days (IQR: 4.0-7.4 days). CONCLUSION The substantial hospital-level variation in opioid use in pediatric inpatients suggests room for improvement in clinical practice.

Predictors of Antiemetic Alteration in Pediatric Acute Myeloid Leukemia

Better knowledge of patient and cancer treatment factors associated with nausea/vomiting (NV) in pediatric oncology patients could enhance prophylaxis. We aimed to describe such factors in children receiving treatment for acute myeloid leukemia (AML).

The pediatric rheumatology quality of life scale: validation of the English version in a US cohort of juvenile idiopathic arthritis

BackgroundThis study aims to validate the English version of the Pediatric Rheumatology Quality of Life Scale (PRQL), a concise Health Related Quality of Life (HRQoL) measure, in a US cohort of children with juvenile idiopathic arthritis (JIA).MethodsThe PRQL is a 10-item HRQoL measure with two subscales: physical health and psychological health. The original version of this measure was validated using an Italian-speaking cohort of 472 JIA patients and 796 healthy controls and found to have acceptable psychometric properties. The English language version has not been validated in a US pediatric population. The English PRQL was administered to 161 JIA subjects from a US Rheumatology clinic. We assessed the reliability (internal consistency and test-retest) and validity (convergent, discriminative, and criterion) of the PRQL.ResultsThe English PRQL was feasible to administer and demonstrated good psychometric properties. Cronbach alpha (reliability) coefficients ranged from 0.72 to 0.81. Factor analysis yielded the existing subscales. The PRQL total and subscales were found to have moderate correlations with other HRQoL instruments, the Pediatric Quality of Life Inventory (PedsQL) generic core scale and the PedsQL rheumatology. The PRQL discriminated between subjects with active versus inactive disease and was responsive to an improvement or worsening in disease activity over time.ConclusionsOur results suggest that the English version of the instrument is suitable for use in JIA patients in the US. This tool provides a relatively easy method to integrate at least one patient-reported outcome into routine clinical or research assessment.

Pragmatic estimates of the proportion of pediatric inpatients exposed to specific medications in the USA

To provide pragmatic national estimates of the proportion of hospitalized pediatric patients exposed to specific drugs in the USA.