Publications by authors named "John R Barber"

Background: Children with medical complexity (CMC), a subset of children with special healthcare needs, have chronic conditions affecting multiple organ systems, require medical technology, and account for a significant share of pediatric healthcare spending despite comprising only 1% of the population. Their families experience unique stressors, including financial strain and high rates of workforce attrition, suggesting medical inequity is an independent risk factor for health inequity. The role of universal caregiver stress screening using a validated tool within the outpatient primary care medical home for CMC youth has not been explored in the literature.

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Background: Hematopoietic stem cell transplant (HSCT) is a curative procedure for conditions requiring the replacement of bone marrow. Respiratory viral infections (RVI) in the lower respiratory tract (LRT) cause substantial morbidity and transplant-related mortality (TRM) in pediatric transplant recipients, but the impact of mild/asymptomatic RVI is unclear. Some studies have identified certain viral infections as high risk for posttransplant complications.

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Introduction: Ornithine transcarbamylase deficiency (OTCD, MIM: 311250) is an X-linked disorder of ureagenesis caused by pathogenic variants in OTC (MIM: 300461). Due to varying X-inactivation patterns, female heterozygotes can range from asymptomatic to severe disease with recurrent hyperammonemia. There is a paucity of data regarding the safety of pregnancy in symptomatic versus asymptomatic OTC heterozygotes.

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Two-thirds of children with cerebral malaria (CM) exhibit retinopathy characterized by whitening, vessel color changes, and/or hemorrhages. The pathogenesis of malarial retinopathy is not fully understood. This study aimed to assess the relationship between malarial retinopathy and the severity of its components (macular whitening, retinal hemorrhages, and vessel color changes) with the total, circulating, or sequestered parasite load in children with CM.

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Article Synopsis
  • The study examined the long-term survival of pacemaker and defibrillator leads in pediatric patients with congenital heart disease over a 30-year period, revealing overall lead survival rates of 87% at 10 years and 69% at 20 years.
  • It identified factors that contributed to earlier lead failure, including male sex, younger age, significant somatic growth, lead location, and implantation technique.
  • The most critical factor linked to lead failure was significant patient somatic growth of 5 cm/year or more, which affected both lead performance and the relationship between demographic characteristics and lead longevity.
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Background: Multiple clinical trials evaluating therapies for cerebral malaria (CM) have failed to demonstrate improved outcomes. This may derive from inclusion of children at all risk levels, including those at low risk of mortality or neurologic morbidity, limiting power to detect significant differences between intervention arms. One solution is enrichment, enrolling clinical trial participants at higher risk of adverse outcomes.

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Objective: Examine associations between time spent in academic activities perceived as meaningful and professional well-being among academic pediatrics faculty.

Methods: The sample comprised 248 full-time pediatric faculty (76% female, 81% white, non-Hispanic, 41% instructor or assistant professor) across the United States who completed an online survey in November 2019. Survey items included sociodemographic and professional characteristics, professional well-being measures (Stanford Professional Fulfillment Index; Maslach Burnout Inventory; Intention to Leave Academic Medicine), perceived meaningfulness of academic activities and assigned time to those activities.

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Background: In children with cerebral malaria (CM) admission blood lactate has previously guided intravenous fluid therapy and been validated as a prognostic biomarker associated with death. The usefulness of post-admission measurements of blood lactate in children with CM is less clear. The strength of association between blood lactate and neurological sequelae in CM survivors, as well as the optimal duration of post-admission measurements of blood lactate to identify children at higher risk of adverse outcomes is unknown.

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Children surviving central nervous system (CNS) infections are at high risk of neurological, behavioral, and cognitive sequalae. Early identification, characterization, and treatment of these sequelae may improve child and family health. In Africa, it is unclear if there are demographic or clinical factors that increase the risk of post-hospital loss to follow-up in children with CNS infections.

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Purpose: Individuals with urea cycle disorders (UCDs) may develop recurrent hyperammonemia, episodic encephalopathy, and neurological sequelae which can impact Health-related Quality of Life (HRQoL). To date, there have been no systematic studies of HRQoL in people with UCDs.

Methods: We reviewed HRQoL and clinical data for 190 children and 203 adults enrolled in a multicenter UCD natural history study.

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Hypoglycemia, defined as a blood glucose < 2.2 mmol/L, is associated with death in pediatric cerebral malaria (CM). The optimal duration of glucose monitoring in CM is unknown.

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Background: COVID-19 was declared a global pandemic in March 2020. Early reports were primarily in adults, and sickle cell disease (SCD) was classified as a risk factor for severe COVID-19 disease. However, there are a limited number of primarily multi-center studies reporting on the clinical course of pediatric patients with SCD and COVID-19.

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Background: Myriad roles for high-density lipoprotein (HDL) beyond atheroprotection include immunologic functions implicated in the severity of coronavirus disease-2019 (COVID-19) in adults. We explored whether there is an association between HDL and COVID-19 severity in youth.

Methods: A pediatric cohort ( = 102), who tested positive for COVID-19 across a range of disease manifestations from mild or no symptoms, to acute severe symptoms, to the multisystem inflammatory syndrome of children (MIS-C) was identified.

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Objective: Despite the emotional challenges of parental adjustment to a child's type 1 diabetes diagnosis and the unique complexities of early childhood, there are few programs designed to meet the needs of parents of young children at new onset. This study evaluated First STEPS (Study of Type 1 in Early childhood and Parenting Support), a stepped-care behavioral intervention designed to support parents' psychosocial functioning and promote children's glycemic outcomes.

Research Design And Methods: Using a two-site randomized clinical trial design, parents (n = 157) of children aged 1-6 years completed baseline data within 2 months of diabetes diagnosis and were randomly assigned to intervention (n = 115) or usual care (n = 42) for 9 months.

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Current biomarkers are inadequate prognostic predictors in localized prostate cancer making treatment decision-making challenging. Previously, we observed that the combination of more variable telomere length among prostate cancer cells and shorter telomere length in prostate cancer-associated stromal cells - the telomere biomarker - is strongly associated with progression to metastasis and prostate cancer death after prostatectomy independent of currently used pathologic indicators. Here, we optimized our method allowing for semi-automated telomere length determination in single cells in fixed tissue, and tested the telomere biomarker in five cohort studies of men surgically treated for clinically localized disease (N = 2,255).

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Background: Our goal was to improve pediatric residents' advanced communication skills in the setting of referral to address the entrustable professional activity of subspecialty referral identified by the American Board of Pediatrics. To accomplish this aim, we created a referral and consultation curriculum to teach and assess core communication skills in subspecialty referral involving an adolescent with syncope, an anxiety-provoking symptom that is rarely associated with serious pathology.

Methods: We utilized blended multimodal educational interventions to improve resident communication skills in referral of patients.

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Sugar intake, particularly fructose, is implicated as a factor contributing to insulin resistance via hepatic de novo lipogenesis (DNL). A nine-day fructose reduction trial, controlling for other dietary factors and weight, in children with obesity and metabolic syndrome, decreased DNL and mitigated cardiometabolic risk (CMR) biomarkers. Ceramides are bioactive sphingolipids whose dysregulated metabolism contribute to lipotoxicity, insulin resistance, and CMR.

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Background: Pathogen inactivated (PI) platelets are a technological advancement in blood safety; however, the pediatric experience is not well characterized. We studied pediatric patients who received transfusions of PI platelets across several centers and countries to determine if transfusion reaction rates differed when compared with conventional platelets.

Methods: This is a retrospective multisite study conducted during 2 time periods.

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Background: Lipid-lowering drugs, particularly statins, are associated with reduced incidence of certain cancers in some studies. Associations with cancer mortality are not well studied, and whether associations are similar across race is unknown.

Methods: We conducted a prospective analysis of 12 997 cancer-free participants in the Atherosclerosis Risk in Communities Study who were never users at visit 1 (1987-1989).

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Objective: The current study explored pre-pandemic sociodemographics, medical characteristics, social/family support, and mood symptoms, and current COVID-19 experiences as predictors of mood, positive/negative diabetes-specific experiences, and COVID-19-specific distress among parents of children with type 1 diabetes during the COVID-19 pandemic. We hypothesized that parents from marginalized backgrounds, youth with higher pre-pandemic A1c and no CGM use, parents with lower pre-pandemic social/family support and more pre-pandemic mood/anxiety symptoms, and those with more negative COVID-19 experiences would have more depressive symptoms, fewer positive and more negative diabetes-specific experiences, and more COVID-19-specific distress during the initial months of the pandemic.

Research Design And Methods: Participants were parents of early school-age children with type 1 diabetes (n = 100; 65% non-Hispanic, white, 92% mothers, 75% married; M  = 6.

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In our prior studies, obesity was associated with shorter telomeres in prostate cancer-associated stromal (CAS) cells, and shorter CAS telomeres were associated with an increased risk of prostate cancer death. To determine whether the association between obesity and shorter CAS telomeres is replicable, we conducted a pooled analysis of 790 men who were surgically treated for prostate cancer, whose tissue samples were arrayed on five tissue microarray (TMA) sets. Telomere signal was measured using a quantitative telomere-specific FISH assay and normalized to 4',6-diamidino-2-phenylindole for 351 CAS cells (mean) per man; men were assigned their median value.

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Background: Pathological and clinical stage are associated with prostate cancer-specific survival after prostatectomy. With PSA screening, the post-surgery prognostic utility of clinical stage is debatable in studies seeking to identify new biomarkers. Few studies have investigated clinical stage and lethal prostate cancer association after accounting for pathological stage.

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Background: Intraprostatic inflammation is an emerging prostate cancer risk factor. Estrogens are pro-inflammatory while androgens are anti-inflammatory. Thus, we investigated whether serum sex steroid hormone concentrations are associated with intraprostatic inflammation to inform mechanistic links among hormones, inflammation, and prostate cancer.

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Background: Given our previous findings that low intratumoral and high extratumoral mast cell numbers are associated with higher risk of biochemical recurrence after radical prostatectomy, we now assessed this relationship with race and the development of metastases.

Methods: We stained for mast cell tryptase via IHC and fluorescent immunolabeling in 885 men across multiple tissue microarray sets designed to assess biomarkers in association with race and prostate cancer outcomes (median follow-up, 7.0 years).

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Background: Black men have worse prostate cancer outcomes following treatment than White men even when accounting for prognostic factors. However, biological explanations for this racial disparity have not been fully identified. We previously showed that more variable telomere lengths among cancer cells and shorter telomere lengths in cancer-associated stromal (CAS) cells individually and together ("telomere biomarker") are associated with prostate cancer-related death in surgically treated men independent of currently used prognostic indicators.

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