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Background and Objective: Access to personal medical information promotes patient understanding of health issues and enables patient self-advocacy of healthcare needs. The advent of electronic medical record systems and the 2016 21st Century CURES Act promoted and encouraged patient access to personal medical information, yet technology-dependent modalities have often disadvantaged certain communities. We sought to evaluate whether disparities existed in access to patient portals at our institution, the main pediatric care provider in an area serving one million children., Methods: We evaluated the activation of patient portal accounts at our institution over the past decade (2010-2021). Portal activation data were analyzed by ethnic background and language preference and income information available based on primary home access location. Further, we evaluated portal activation rates over time and across institutional interventions. A logistic regression model was used to identify important demographic associations with portal account status., Results: Over 1 million patients were served at our pediatric institution over the study period with 47.7% having ever activated their patient portals. Univariate analyses and ultimately logistic regression modeling demonstrated significant differences in portal activation by ethnicity (odds ratio (confidence interval):1.36 (1.34, 1.37)), language preference (1.39 (1.37, 1.40)), and median household income (1.00001 (1.00001, 1.00001)). Interim interventions were successful in improving portal activation rates., Discussion: Overall, electronic medical record portal activation was less prevalent among Hispanic, non-English speakers, and patients living in communities with lower median household income., Conclusion: Opportunities for interventions exist to reduce healthcare disparities in these underserved communities., (© 2024. The Author(s).)

Objectives: Analysis of the clinical utility of rapid whole-genome sequencing (rWGS) outside of the neonatal period is lacking. We describe the use of rWGS in PICU and cardiovascular ICU (CICU) patients across four institutions., Design: Ambidirectional multisite cohort study., Setting: Four tertiary children's hospitals., Patients: Children 0-18 years old in the PICU or CICU who underwent rWGS analysis, from May 2016 to June 2023., Interventions: None., Measurements and Main Results: A total of 133 patients underwent clinical, phenotype-driven rWGS analysis, 36 prospectively. A molecular diagnosis was identified in 79 patients (59%). Median (interquartile range [IQR]) age was 6 months (IQR 1.2 mo-4.6 yr). Median time for return of preliminary results was 3 days (IQR 2-4). In 79 patients with a molecular diagnosis, there was a change in ICU management in 19 patients (24%); and some change in clinical management in 63 patients (80%). Nondiagnosis changed management in 5 of 54 patients (9%). The clinical specialty ordering rWGS did not affect diagnostic rate. Factors associated with greater odds ratio (OR [95% CI]; OR [95% CI]) of diagnosis included dysmorphic features (OR 10.9 [95% CI, 1.8-105]) and congenital heart disease (OR 4.2 [95% CI, 1.3-16.8]). Variables associated with greater odds of changes in management included obtaining a genetic diagnosis (OR 16.6 [95% CI, 5.5-62]) and a shorter time to genetic result (OR 0.8 [95% CI, 0.76-0.9]). Surveys of pediatric intensivists indicated that rWGS-enhanced clinical prognostication ( p < 0.0001) and contributed to a decision to consult palliative care ( p < 0.02)., Conclusions: In this 2016-2023 multiple-PICU/CICU cohort, we have shown that timely genetic diagnosis is feasible across institutions. Application of rWGS had a 59% (95% CI, 51-67%) rate of diagnostic yield and was associated with changes in critical care management and long-term patient management., Competing Interests: Drs. Rodriguez and Coufal’s institution received funding from the National Institutes of Health (NIH). Drs. Rodriguez, Kingsmore (grants U19HD077693, UL1TR002550, and 1UM1TR004407), and Coufal received support for article research from the NIH. Dr. Kingsmore received funding from Ultragenyx, Amgen, Horizon, Sanofi, Takeda, Alexion, Sarepta, Ionis, Inozyme, Travere, and Orchard. Dr. Coufal received funding from Rady Children’s Hospital. The remaining authors have disclosed that they do not have any potential conflicts of interest., (Copyright © 2024 The Author(s). Published by Wolters Kluwer Health, Inc. on behalf of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies.)

Background: Patent ductus arteriosus stenting (PDAS) is a nonsurgical alternative to Blalock-Taussig-Thomas shunt (BTTS) for infants with ductal-dependent congenital heart disease. In this single-center study, we aimed to compare neurodevelopmental outcomes in children who underwent BTTS as initial palliation versus PDAS., Methods: Bayley Scales of Infant and Toddler Development Screening Test (Bayley-III) reports and mode of feeding data were collected for any patient who underwent PDAS or BTTS at Rady Children's Hospital from 2013 to 2021. We also prospectively administered the Parents' Evaluation of Development Status questionnaire (PEDS) to parents of children aged 2-8 years in this patient population., Results: Of the 99 patients, 64 received a Bayley-III assessment and/or PEDS screen. Of the 35 who had a Bayley-III, there was a higher proportion of patients with PDAS who scored as developmentally appropriate compared with BTTS. PEDS screen showed that a higher proportion of patients with PDAS had no parental concern for delay than that of patients with BTTS (63% vs 30%). Patients with BTTS were more likely to undergo gastrostomy tube placement than patients with PDAS., Conclusions: Our study suggests that neurodevelopmental measures are feasible, clinically relevant, and should be included in comparative effectiveness studies of infant congenital interventions. Whether PDAS offers neurodevelopmental benefit over BTTS should be confirmed in a prospective powered randomized controlled clinical trial., (© 2024 The Author(s).)