In contrast to some earlier reports, our study of North American children and young adults demonstrated that KD patients whose maximum CA dimensions were either always normal or mildly ectatic have normal vascular health indexes, providing reassurance regarding peripheral vascular health in this population.

Through improving diagnostics and prognostics genomic sequencing promises to significantly impact clinical decisions for children with critical cardiac disease. Little is known about how families of children with critical cardiac disease perceive the impact of genomic sequencing on clinical care choices.DESIGN: Qualitative interview study. SETTING:A high-volume, tertiary pediatric heart center. SUBJECTS:Families of children with critical cardiac disease. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS:Thematic analysis of interview response content. Thirty-five families were interviewed. Three themes emerged: 1) benefits versus challenges of having genomic sequencing results, and 2) fears of clinical applications of genomic sequencing, and 3) nonclinical fears related to genomic sequencing. Participants struggled with perceived uses of genomic sequencingderived knowledge. They described comfort in foreknowledge of their child's likely disease course but articulated significant apprehension around participating in care decisions with limited knowledge of genomic sequencing, genomic sequencing uses to inform clinical resource rationing decisions, and genomic sequencing uses by third parties impacting financial pressures families experience caring for a child with critical cardiac disease. CONCLUSIONS:Families' perceptions of genomic sequencing uses in critical cardiac disease appear to strain their overall trust in the health system. Erosion of trust is concerning because the potential of genomic sequencing in critical cardiac disease will be unrealized if families are unwilling to undergo genomic sequencing, let alone to participate in the ongoing research needed to link genomic sequencing variants to clinical outcomes. Our findings may have implications for genomic sequencing use in children with other critical, high-acuity diseases.

OBJECTIVES: To quantify and describe patient-generated health data. METHODS: This is a retrospective, single-center study of patients hospitalized in the pediatric cardiovascular ICU between February 1, 2020, and February 15, 2020. The number of data points generated over a 24-hour period per patient was collected from the electronic health record. Data were analyzed by type, and frontline provider exposure to data was extrapolated on the basis of patient-to-provider ratios. RESULTS: Thirty patients were eligible for inclusion. Nineteen were hospitalized after cardiac surgery, whereas 11 were medical patients. Patients generated an average of 1460 (SD 509) new data points daily, resulting in frontline providers being presented with an average of 4380 data points during a day shift (7:00 am to 7:00 pm). Overnight, because of a higher patient-to-provider ratio, frontline providers were exposed to an average of 16 060 data points. There was no difference in data generation between medical and surgical patients. Structured data accounted for >80% of the new data generated. CONCLUSIONS: Health care providers face significant generation of new data daily through the contemporary electronic health record, likely contributing to cognitive burden and putting them at risk for cognitive overload. This study represents the first attempt to quantify this volume in the pediatric setting. Most data generated are structured and amenable to data-optimization systems to mitigate the potential for cognitive overload and its deleterious effects on patient safety and health care provider well-being.