Lucile Packard Children's Hospital

Neonatal encephalopathy (NE)-including hypoxic-ischemic encephalopathy (HIE)-is associated with significant morbidity and mortality worldwide. While data registries provide hypothesis-generating data, aid in quality improvement, and track management/outcomes over time, we recently demonstrated that only 4 of 1,281 (0.3%) variables were collected by all 22 international NE/HIE registries: birth weight, gestational age, and 1- and 5-minute Apgar scores. In response, our team set out to develop a set of common inpatient data elements to enable future harmonization of NE/HIE registry data. Using a modified Delphi method, a panel of 14 international NE experts voted to separate the 1,281 variables from our previous study into "core elements," "supplemental elements," or those that "do not need to be collected." Based on the anonymous survey results, we created draft lists of core and supplemental common data elements (CDEs). These lists were further revised through group consensus meetings and external feedback from global registry leaders and attendants at 2 international conferences. The final data forms include 164 core elements and 225 supplemental elements stratified into 11 domains: demographics; pregnancy, labor, and delivery; delivery room; transport; acid-base; therapeutic hypothermia; neuromonitoring and seizures; neuroimaging; laboratory values (other than acid-base); hospital course; and discharge. The CDEs are the first of several important steps to further standardize research and reporting of NE/HIE investigations to perform more efficient and powerful clinical research in the field moving forward. Future studies need to establish a clinical and research definition of HIE and develop CDEs for collecting long-term, family-centered follow-up data postdischarge.

Focused abbreviated survey technique (FAST) brain magnetic resonance imaging (MRI) (i.e., sedation-free abbreviated MRI) is progressively being implemented in the daily clinical practice of multiple pediatric institutions for neuroimaging assessment of children presenting with neurological disorders. To survey current awareness, imaging practices, and perception of members of the European Society of Pediatric Radiology (ESPR) regarding pediatric FAST brain MRI. A survey consisting of seven questions related to FAST brain MRI was distributed electronically to all ESPR members. A total of 64 responses from 27 different countries (17 of which were European) were received, corresponding to a 4% response rate. Among responders, 68% were full-time pediatric radiologists and the great majority (94%) were aware of current clinical use of FAST brain MRI in the pediatric setting. Moreover, 83% already apply this imaging approach in daily work activity, more commonly for a few years (85%). The most cited advantage for adopting this imaging approach was radiation risk reduction (95%). Major reported obstacles to routine implementation were technical/human resource limitations (63%), potential medicolegal implications (55%), and lower image quality reducing diagnostic accuracy (53%). Diverse protocols are used, including utilization of inhouse/custom developed solutions (68%) or one of multiple commercially available/published protocols (17%), or both (15%). Near all participants (97%) expressed desire for formal consensus recommendations from the ESPR on the topic. Despite widespread knowledge and high clinical adoption rate of pediatric FAST brain MRI among participants, clinical indications/protocols remain variable and some barriers persist in the daily practice, highlighting the need for evidence-based consensus-driven guidelines.

Hospitalized patients and their caregivers experience anxiety and fear, which are associated with medical noncompliance and delayed medical care. While virtual reality (VR) is a safe and effective therapeutic adjunct in reducing distress and increasing cooperation, design aspects that contribute to software effectiveness remain limited. This prospective, observational study evaluated VR elements that increased awe, a psychological state correlated with improved behavior, satisfaction, and anxiolysis. Fifty-five patients (ages 6-25 years) and 65 parental caregivers (ages ≥18 years) at a quaternary care academic pediatric hospital interacted with a custom-developed VR program comparing design elements: sound (audible compared to mute), involvement (active compared to passive), and perspective (first person compared to third person) for 15 seconds each. Within-subject outcomes investigated included self-reported awe, perceived vastness, perceived need for accommodation, and engagement. Data were analyzed using repeated-measure analysis of variance tests. Audible sound increased perceived awe and need for accommodation in adults, while the third-person perspective improved the need for accommodation in patients and adults. Active or passive involvement did not affect perceived awe nor aspects of awe. All measures of awe were positively correlated with game engagement. When software designers and clinicians are designing and selecting VR applications for patients and their caregivers, third-person perspectives may be considered for all audiences, while audible sound settings are optimal for adult audiences.

Tofacitinib is a selective Janus kinase (JAK-1) inhibitor approved for the treatment of ulcerative colitis (UC) in adults. Data is limited in the pediatric population. The aim of this study was to evaluate the efficacy of tofacitinib in pediatric inflammatory bowel disease (IBD). The primary aim was to assess clinical response (categorical improvement in disease activity from baseline) after induction (8-12 weeks). The secondary aims were to assess effectiveness of tofacitinib in achieving corticosteroid-free remission and biochemical response and overall safety. We performed a retrospective multicenter study of pediatric patients with IBD at eight centers across the United States between 2018 and 2023. We collected demographic data, disease classification, prior biologic medication use, laboratory and clinical disease activity, corticosteroid use, adverse events and side effects, and surgical data. Thirty-seven patients were included in this study. Eighteen patients (52.9%) achieved a clinical response within 8-12 weeks, which increased to 20 (58.8%) by 20-28 weeks. Corticosteroid-free remission was achieved by 14 patients (41.2%) by 8-12 weeks, followed by 16 patients (47.1%) at 20-28 weeks. Improvement in albumin and C-reactive protein (CRP) occurred as early as 8-12 weeks. Surgical rate was 10.5% (4/38 patients). Infection was a common adverse effect reported with the use of tofacitinib. This is one of the largest studies evaluating the use of tofacitinib in pediatric IBD in the United States. Our results demonstrate that tofacitinib is an effective treatment for these patients.

Stereo-electroencephalography (sEEG) is a minimally invasive technique for intracranial monitoring that was traditionally reserved for adults but is increasingly used in very young pediatric patients with drug-resistant epilepsy. The aim of this study was to evaluate its safety, feasibility, and technical considerations in pediatric patients younger than 3 years. The authors reviewed the records of 21 children younger than 3 years who underwent sEEG monitoring at Lucile Packard Children's Hospital between February 2013 and March 2025. Data were collected from patients' clinical records and operative reports. Skull thickness was measured at the thinnest point under electrodes. Primary outcome variables were 1) sEEG-related complications, and 2) electrode placement entry point error (EPE) and target point error (TPE). Twenty-one patients (67% male) had a mean ± SE age at seizure onset of 0.5 ± 0.5 years (range birth-1.6 years). Patients underwent 23 sEEG surgeries at a mean age of 2.2 ± 0.1 years (range 0.9-2.7 years). The Mayfield headframe with the Infinity Support System was used in 65% of cases. Overall, a mean of 19 ± 1 (range 9-27) depth electrodes were placed per patient. In total, 443 electrodes were placed, most often in the frontal (189 electrodes, 43%) and temporal (121 electrodes, 27%) regions. A total of 440 bolts were used, and the most common sizes were 20 mm (68%) and 13 mm (18%); 3 electrodes were placed without bolts. The mean skull thickness at the thinnest point of electrode placement was 2.0 ± 0.1 mm (range 1.5-3.2 mm). For 417 electrodes available for analysis, the mean EPE was 1.9 ± 0.1 mm, and the mean TPE was 2.8 ± 0.1 mm. Aside from a CSF leak from a bolt in 1 patient, there were no complications. The most common procedures included open resection (61% of sEEG cases) and laser ablation (30%). Procedures were performed at a mean of 43 ± 11 days (range 0-150 days) after sEEG removal, with a mean patient age of 2.3 ± 0.1 years (range 1.2-2.9 years). This study supports the safety and feasibility of sEEG in children younger than 3 years, even in those with a skull thickness < 2 mm. Moreover, the authors report the youngest patient in the literature to have undergone sEEG at 11 months, without complications. The minimum skull thickness in which an electrode was successfully secured with a bolt was 1.5 mm. With appropriate technical adaptations, sEEG can be accurately performed in children younger than 3 years.

ObjectiveTo compare weight gain in infants with PRS treated with nonsurgical orthodontic airway plate (OAP) or surgical mandibular distraction osteogenesis (MDO).DesignRetrospective cohort study.SettingSingle tertiary-care pediatric center.PatientsNeonates and infants with PRS at a single institution from 2016 to 2023.InterventionsNonsurgical OAP or surgical MDO, with or without gastrostomy tube (GT) placement.Main Outcome MeasuresWeight, weight-for-age (WFA) percentile, and WFA Z-score were analyzed at four timepoints: at birth (T0), start of treatment (T1), end of treatment (T2), and end of observation (T3, approximately 12 months of age). Fisher's exact, two-tailed paired t-test, and mixed effect models were used to compare groups.ResultsTwenty OAP-treated and sixteen MDO-treated infants with two MDO-Subgroups based on oral feeds status at T3. There were no differences in comorbidities between groups. GT was inserted in no infants in OAP and nine infants in MDO. The hospital stay and total treatment duration were 13.1 days (± 4.8) and 4.3 months (± 0.98) in OAP and 20.8 days (± 11.2) and 4.6 months (± 0.99) in MDO, respectively. There was no difference in weight parameters between OAP and MDO at any time point. All infants in OAP achieved full oral feeds significantly earlier than MDO (p < .001).ConclusionsWeight gain in infants with PRS treated with either OAP alone or MDO ± GT at a single institution was similar during the first year of life.

The purpose of these guidelines is to offer nuclear medicine teams a framework that could prove helpful in daily practice. The guidelines include information related to the indications, acquisition, processing and interpretation of bone scans in children, focusing primarily on 99m Tc-labelled diphosphonate scintigraphy with SPECT/CT, and also recommendations with regard to PET imaging with [ 18 F]fluoride.

Minimally invasive repair of pectus excavatum (MIRPE) is among the most painful elective procedures in pediatric patients and is frequently managed with both inpatient and outpatient opioids. However, opioid prescribing practices vary, and evidence-based discharge guidelines are lacking. This study aimed to evaluate outpatient opioid prescribing patterns following MIRPE across multiple institutions. A multicenter retrospective review was performed of patients (<21 years) who underwent MIRPE from 2022 to 2023 across 10 hospitals in the Western Pediatric Surgery Research Consortium. Demographic, operative, inpatient, and outpatient opioid data were collected. All opioid doses were converted to oral morphine equivalents (OME) using standardized conversion factors. Associations between inpatient opioid use and discharge prescriptions were assessed with linear regression. Among 532 patients (85.9 % male; median age 15.5 years [IQR 14.5-17.1]; median Haller index 4.5 [3.8-5.7]), 91 % received intercostal nerve cryoablation. Median hospital length of stay was 1 day [1-2]. Patients were discharged with a median of 10 opioid doses [8-16.5], equivalent to 75 OME [45-120] or 1.32 OME/kg [0.85-2.12]. Discharge prescriptions varied substantially by institution, ranging from 0 [0-10] to 20 [10-20] doses. Discharge OME correlated with inpatient opioid use (β = 0.35, 95%CI 0.26-0.44) and length of stay (β = 20.9, 95%CI 13.4-28.3). Outpatient opioid prescriptions following MIRPE varied widely across hospitals and were positively associated with inpatient opioid use and hospital stay. These findings underscore the need for standardized discharge analgesia guidelines to reduce variability and minimize excess opioid prescribing in pediatric surgical care.