Improving Completion Rates of Transcranial Doppler Ultrasounds in Children With Sickle Cell Disease Using Quality Improvement Efforts: In-Clinic versus Population-Based Assessments.

Transcranial Doppler (TCD) screening is essential for stroke prevention in children with sickle cell disease (SCD), but screening rates are low nationally. We use Medicaid administrative claims to assess TCD completion rates before and after a 12-month QI initiative to improve rates in the Pacific Sickle Cell Regional Collaborative (PSCRC). We found an increase in TCD screening rates for QI participant sites (52.

Proposed resources required for a comprehensive program for CCT CHD imaging.

Background: Cardiac Computed Tomography (CCT) is increasingly used for evaluation of congenital heart disease (CHD) in patients of all ages. Pediatric and adult congenital heart disease (ACHD) surgical programs require high quality CCT imaging as part of the multimodality imaging support expected of comprehensive care centers. Despite these expectations, there are no benchmarks or defined programmatic elements specific to the performance of CCT in patients with CHD.

The ACTION VAD Registry: A Collective Five-Year Experience.

Background: The Advanced Cardiac Therapies Improving Outcomes Network (ACTION) began in 2018 as a collaborative learning health system committed to improving outcomes in pediatric heart failure, including children and adults with congenital heart disease, supported with ventricular assist devices (VADs). This report describes patient and device characteristics, and outcomes through 1-year post-implant.

Methods: The ACTION VAD registry report was created from data submitted to the ACTION learning network from April 2018-June 2023.

Comparison of Postoperative Antibiotic Protocols for Pediatric Complicated Appendicitis: A Western Pediatric Surgery Research Consortium Study.

Background: There is no consensus on the appropriate duration of postoperative antibiotics for complicated appendicitis in children. Commonly used antibiotic endpoints include normalization of white blood cell count (WBC) or completion of a minimum number of prespecified treatment days. We compared clinical outcomes resulting from varying postoperative antibiotic protocols for complicated appendicitis in children.

Emotional Health of Transgender Youth 24 Months After Initiating Gender-Affirming Hormone Therapy.

Purpose: Limited data exist about the emotional health of transgender youth, either before or after initiation of gender-affirming hormone (GAH). The objectives were: (1) Investigate and verify the factor structure of the National Institutes of Health Toolbox Emotional Battery (NIHTB-EB) among trans and non-binary (TNB) youth; (2) Examine changes in emotional health over 24 months of GAH treatment; and (3) Examine the extent to which changes in emotional health were associated with improved appearance congruence (AC).

Methods: Study respondents were from Trans Youth Care - United States (TYCUS) study, an observational, prospective, longitudinal study of adolescents initiating GAH enrolled between 2016 and 2019.

Assessing Clinical Improvement of Infants Hospitalized for Respiratory Syncytial Virus-Related Critical Illness.

Background: Pediatric respiratory syncytial virus (RSV)-related acute lower respiratory tract infection (LRTI) commonly requires hospitalization. The Clinical Progression Scale Pediatrics (CPS-Ped) measures level of respiratory support and degree of hypoxia across a range of disease severity, but it has not been applied in infants hospitalized with severe RSV-LRTI.

Methods: We analyzed data from a prospective surveillance registry of infants hospitalized for RSV-related complications across 39 U.

Communicating neurological prognosis in the prenatal period: a narrative review and practice guidelines.

Clinicians may face an array of challenges in conducting fetal neurological consultations including prognostic uncertainty, a lack of training in fetal counseling, and limited opportunity to build rapport with families. In this setting, it is critical to employ high-quality, family-centered care to allow expectant parents to make informed decisions. Despite the challenges and gravity of these consultations, there remains limited data outlining best conduct and communication practices.

Performance of individual criteria of the Pediatric Emergency Care Applied Research Network (PECARN) intraabdominal injury prediction rule.

Objective: The Pediatric Emergency Care Applied Research Network (PECARN) derived and externally validated a clinical prediction rule to identify children with blunt torso trauma at low risk for intraabdominal injuries undergoing acute intervention (IAI). Little is known about the risk for IAI when only one or two prediction rule variables are positive. We sought to determine the risk for IAI when either one or two PECARN intraabdominal injury rule variables are positive.

Sustained growth-promoting effects of vosoritide in children with achondroplasia from an ongoing phase 3 extension study.

Background: Vosoritide is a C-type natriuretic peptide analog that addresses an underlying pathway causing reduced bone growth in achondroplasia. Understanding the vosoritide treatment effect requires evaluation over an extended duration and comparison with outcomes in untreated children.

Methods: After completing ≥6 months of a baseline observational growth study and 52 weeks in a double-blind, placebo-controlled study (ClinicalTrials.

Framework for developing self-actualization skills in young adults with autism.

Purpose: Young adults with autism spectrum disorder (YAASD) often lack the skills needed for successful adult living and subsequently develop lower quality of life and health in adulthood. Therefore, we developed a framework to support resilience and improve quality of life in YAASD, which will be used to develop a life-skills curriculum for YAASD.

Methods: We conducted a qualitative study of YAASD, parents of YAASD and service providers recruited from agencies that serve YAASD using Grounded Theory.

Neonatal Seizures and Associated Neurobehavioral Profiles in Preschool Age Children.

Background: Neonatal seizures are common with acute brain injury. Up to 25% of survivors develop postneonatal epilepsy. We hypothesized postneonatal epilepsy diagnosed by age 24 months would increase risk for early markers of neurobehavioral disorders than acute provoked neonatal seizures alone.

Chorioamnionitis and Two-Year Outcomes in Infants with Hypoxic-Ischemic Encephalopathy.

Objective: To determine if chorioamnionitis is associated with an increased risk of adverse 2-year outcomes among infants with hypoxic-ischemic encephalopathy (HIE).

Study Design: This cohort study included all infants with moderate to severe HIE treated with therapeutic hypothermia and enrolled on the High-dose Erythropoietin for Asphyxia and Encephalopathy Trial. Clinical chorioamnionitis (CC) was defined as a diagnosis made by a treating obstetrician and histologic chorioamnionitis (HC) was defined as placental inflammation observed on histology.

Neonatal Seizures: New Evidence, Classification, and Guidelines.

Neonates are susceptible to seizures due to their unique physiology and combination of risks associated with gestation, delivery, and the immediate postnatal period. Advances in neonatal care have improved outcomes for some of our most fragile patients, but there are persistent challenges for epileptologists in identifying neonatal seizures, diagnosing etiologies, and providing the most appropriate care, with an ultimate goal to maximize patient outcomes. In just the last few years, there have been critical advances in the state of the science, as well as new evidence-based guidelines for diagnosis, classification, and treatment of neonatal seizures.

Actigraphy Study Endpoints to Reduce Sample Size and Facilitate Drug Development for Pediatric Pulmonary Arterial Hypertension.

Objective: To investigate the feasibility of using actigraphy to measure physical activity (pA) and heart rate variability (HRV) as study endpoints in pediatric pulmonary arterial hypertension (PAH) and to compare their performance to 6-minute-walk distance (6MWD), a common primary endpoint used in PAH clinical trials in adults and children who can walk and understand the test process.

Study Design: We conducted a prospective, multicenter, noninterventional study in pediatric PAH patients and healthy children. Actiheart and Fitbit Charge 2 recorded pA and heart rate data.

Characterizing the relationship between social determinants of health and risk of albuminuria among children with type 1 diabetes.

In a cohort of 2303 children with type 1 diabetes (T1D), we found that non-English speaking status (HR 2.82, 95% CI 1.54-5.

Neuropsychological Late Effects and Quality-of-Life Outcomes in Pediatric Brain Tumor Survivors: Role of Pediatric Neurologists in Monitoring and Management.

Pediatric brain tumor (PBT) survivors are at significantly increased risk of cognitive, psychosocial, and educational/vocational sequelae that impact health-related quality of life. These complications and health morbidities result in high burden on survivors and their families, particularly those already vulnerable to disparities in health care access and outcomes. Since neurological comorbidities are common in this population, neurologists are uniquely positioned to screen, treat identified symptoms, and connect families with services and resources.

Life After Neonatal Seizures: Characterizing the Longitudinal Parent Experience.

Background: Parents of neonates with seizures report persistent symptoms of depression, anxiety, and posttraumatic stress. We aimed to characterize the parent experience of caring for children impacted by neonatal seizures, including longitudinal assessment across childhood.

Methods: This prospective, observational, multicenter study was conducted at Neonatal Seizure Registry (NSR) sites in partnership with the NSR Parent Advisory Panel.

Emergency department management of acute scrotal pain in pediatric patients.

Testicular torsion is a urologic emergency, accounting for up to 15% of cases of acute scrotal pain. Rapid recognition and management are essential to ensure viability of the testis. Doppler ultrasound can be used to confirm the diagnosis of testicular torsion; however, recent studies suggest that a more judicious use of ultrasound may be safe, decrease delays in surgical management, and avoid unnecessary utilization of resources.