Children's Healthcare of Atlanta

Disability affects ~15.7 million children and ~67 million adults in the US, yet these individuals are typically under-represented in clinical research. Clinical research has increasingly broadened its focus on health outcomes to include "positive health," which reflects the capacity of an individual to adapt to challenges and the absence of disease. A mixed-methods approach is used to investigate disability community perspectives on research inclusion and the use of positive health as an outcome in the context of childhood-onset disability. Nationally, about one-fourth (1/4) of adults with disabilities and parents/caregivers reported participating in non-disability-specific research; overall, ~23% of adults and ~30% of parents/caregivers report exclusion because of disability, despite >80% endorsing health outcomes research. Disability stakeholders unanimously express the need to reframe positive health in a disability context, provide guidance on how to reframe it as a research outcome, and offer a roadmap for improving research inclusion. A paradigm shift in how positive health is framed may enhance its relevance to disabilities. An action plan for researchers is derived as a pragmatic approach to strengthen the relevance, generalizability and impact of their research.

To evaluate trends in neonatal intensive care unit (NICU) admissions, illness acuity, and hospitalization costs among U.S. children's hospitals from 2017 to 2022. This retrospective cohort study used data from the Pediatric Health Information System (PHIS) and included all NICU admissions. We examined trends in patient characteristics (e.g., gestational age, complex chronic conditions), illness severity scores, and standardized hospital costs. Interrupted time series analyses assessed changes in NICU costs over time. There were 234,571 infants admitted to NICUs in US children's hospitals between 2017 and 2022. NICU admissions shifted significantly by gestational age with admissions increasing by 10-18% among extremely, very, and late preterm infants. Term infants remained the largest admission group, averaging 45% annually (p < 0.001). Infants with ≥1 complex chronic condition increased from 46.6% in 2017 to 50.9% in 2022 (p < 0.001). NICU-specific illness severity increased modestly over time (1.14-1.24, p < 0.001). Median standardized NICU hospital costs rose by approximately 20% over the study period, with notable inflections in early 2020 and 2021. Among US children's hospitals in the PHIS database, NICU admissions were increasingly complex and costly. These findings highlight the importance of ongoing monitoring of resource use and patient mix in specialized NICU settings.

Introduction: Pulmonary embolism (PE) is rare in the pediatric population. While outcomes for pediatric PE have been described, minimal data exists defining risk factors for extracorporeal life support (ECLS). Methods: Retrospective review of patients massive/submassive PE presenting to a quaternary children’s hospital from 2016-2022. Clinical variables were collected to assess risk stratification, process timelines, and overall outcomes. Results: Twenty-five patients presented with critical PE (64% females, median age 17 years (14.9, 17.7), median BMI 27) PE risk factors included: a family history of thrombosis (33%), personal history of DVT (50%), and a history of oral contraceptive use (44%). Median pulmonary embolism severity index (PESI) score was 57. All 25 patients underwent catheter-directed thrombolysis (CDT). ECLS was required in 9/25 (36%) for refractory cardiogenic shock and were distributed between three PE risk categories (high=2, intermediate=3, low=4). Pre-CDT variables did not differ between the ECLS and nonECLS groups, including PESI score, right ventricular dilation/strain, or serologic markers of cardiac output. Compared to the non-ECLS group, ECLS patients were more likely to require vasoactives pre-CDT (44% vs 6%, p=0.04) and have higher mean pulmonary artery pressures (52mmHg vs 36mmHg, p=0.004). The ECLS group required more ICU days (15 vs 2.5 days, p=0.004) and longer hospital length of stay (17 vs 5 days, p=0.018). Two deaths occurred in the cohort, both due to neurologic injury. Conclusions: One third of pediatric patients who presented with massive/sub-massive PE required ECLS support due to right ventricular failure. These patients were more likely to require vasoactives pre-CDT and demonstrate higher mean PA pressures. However, standard methods of risk stratification used in adults were unable to predict the degree of critical illness in pediatric patients. Further evaluation of pre-CDT variables is needed to hone risk stratification in this rare yet life threatening event.

Introduction: Withdrawal of life-sustaining treatment (WLST) is the most common mode of death in pediatric intensive care units (PICUs), yet data on how WLST is operationalized remain limited. Prior studies have not adequately examined variability in WLST medical management practices for children across institutions or over time. We hypothesized that substantial institutional and temporal variation exists in WLST practices related to analgesic and sedative use, vasoactive medication discontinuation, neuromuscular blockade, and post-extubation respiratory support. Methods: We performed a secondary analysis of the multicenter DONATE study (2009-2021), which included 905 pediatric patients who died following WLST defined as terminal extubation. Data were abstracted from 9 U.S. tertiary-care PICUs and included medications and interventions administered before and after extubation. Site-level differences were assessed using chi-square or Fisher’s exact tests. Logistic regression was used to assess temporal trends. Results: Of 905 patients, 75.1% died within 1 hour of WLST. Opioids were administered in 79.7% (site range 68-89%, p< 0.001; no significant temporal trend); benzodiazepines in 56.0% (site range 41-66%, p< 0.001; decrease over time OR 0.95 per year, 95% CI 0.90-0.99, p=0.04); dexmedetomidine in 15.5% (site range 4-21%, p=0.002; increase over time OR 1.16 per year, 95% CI 1.05-1.27, p=0.004). Vasoactive infusions were discontinued in 88.1% of cases (site range 59-100%, p< 0.001; increase over time OR 1.15 per year, 95% CI 1.04-1.26, p=0.007). Neuromuscular blockade was used in 5.1% of patients (site range 0-13%, p< 0.001; increase over time OR 1.23 per year, 95% CI 1.08-1.40, p=0.002). Use of any post-extubation respiratory support was rare (5.5%) with no significant site or temporal variation. Conclusions: There is substantial institutional and temporal variability in WLST practices across US PICUs. These findings highlight a need for clearer guidance to reduce variability and support consistent, high-quality end-of-life care for critically ill children.