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Family-centered rounding has emerged as the gold standard for inpatient paediatrics rounds due to its association with improved family and staff satisfaction and reduction of harmful errors. Little is known about family-centered rounding in subspecialty paediatric settings, including paediatric acute care cardiology. In this qualitative, single centre study, we conducted semi-structured interviews with providers and caregivers eliciting their attitudes toward family-centered rounding. An a priori recruitment approach was used to optimise diversity in reflected opinions. A brief demographic survey was completed by participants. We completed thematic analysis of transcribed interviews using grounded theory. In total, 38 interviews representing the views of 48 individuals (11 providers, 37 caregivers) were completed. Three themes emerged: rounds as a moment of mutual accountability, caregivers’ empathy for providers, and providers’ objections to family-centered rounding. Providers’ objections were further categorised into themes of assumptions about caregivers, caregiver choices during rounds, and risk for exacerbation of bias and inequity. Caregivers and providers in the paediatric acute care cardiology setting echoed some previously described attitudes toward family-centered rounding. Many of the challenges surrounding family-centered rounding might be addressed through access to training for caregivers and providers alike. Hospitals should invest in systems to facilitate family-centered rounding if they choose to implement this model of care as the current state risks erosion of provider–caregiver relationship.

Introduction: Family-centred rounds benefit families and clinicians and improve outcomes in general paediatrics, but are understudied in subspecialty settings. We sought to improve family presence and participation in rounds in a paediatric acute care cardiology unit. Methods: We created operational definitions for family presence, our process measure, and participation, our outcome measure, and gathered baseline data over 4 months of 2021. Our SMART aim was to increase mean family presence from 43 to 75% and mean family participation from 81 to 90% by 30 May, 2022. We tested interventions with iterative plan-do-study-act cycles between 6 January, 2022 and 20 May, 2022, including provider education, calling families not at bedside, and adjustment to rounding presentations. We visualised change over time relative to interventions with statistical control charts. We conducted a high census days subanalysis. Length of stay and time of transfer from the ICU served as balancing measures. Results: Mean presence increased from 43 to 83%, demonstrating special cause variation twice. Mean participation increased from 81 to 96%, demonstrating special cause variation once. Mean presence and participation were lower during high census (61 and 93% at project end) but improved with special cause variation. Length of stay and time of transfer remained stable. Conclusions: Through our interventions, family presence and participation in rounds improved without apparent unintended consequences. Family presence and participation may improve family and staff experience and outcomes; future research is warranted to evaluate this. Development of high level of reliability interventions may further improve family presence and participation, particularly on high census days.

Supravalvar aortic stenosis (SVAS) severity guides management, including decisions for surgery. Physiologic and technical factors limit the determination of SVAS severity by Doppler echocardiography and cardiac catheterization in Williams syndrome (WS). We hypothesized SVAS severity could be determined by the sinotubular junction-to-aortic annulus ratio (STJ:An). We reviewed all preintervention echocardiograms in patients with WS with SVAS cared for at our center. We measured STJ, An, peak and mean Doppler gradients, and calculated STJ:An. We created 2 mean gradient prediction models. Model 1 used the simplified Bernoulli's equation, and model 2 used computational fluid dynamics (CFD). We compared STJ:An to Doppler-derived and CFD gradients. We reviewed catheterization gradients and the waveforms and analyzed gradient variability. We analyzed 168 echocardiograms in 54 children (58% male, median age at scan 1.2 years, interquartile range [IQR] 0.5 to 3.6, median echocardiograms 2, IQR 1 to 4). Median SVAS peak Doppler gradient was 24 mm Hg (IQR 14 to 46.5). Median SVAS mean Doppler gradient was 11 mm Hg (IQR 6 to 21). Median STJ:An was 0.76 (IQR 0.63 to 0.84). Model 1 underpredicted clinical gradients. Model 2 correlated well with STJ:An through all severity ranges and demonstrated increased pressure recovery distance with decreased STJ:An. The median potential variability in catheterization-derived gradients in a given patient was 14.5 mm Hg (IQR 7.5 to 19.3). SVAS severity in WS can be accurately assessed using STJ:An. CFD predicts clinical data well through all SVAS severity levels. STJ:An is independent of physiologic state and has fewer technical limitations than Doppler echocardiography and catheterization. STJ:An could augment traditional methods in guiding surgical management decisions.

Background:Pain following surgery for cardiac disease is ubiquitous, and optimal management is important. Despite this, there is large practice variation. To address this, the Paediatric Acute Care Cardiology Collaborative undertook the effort to create this clinical practice guideline.Methods:A panel of experts consisting of paediatric cardiologists, advanced practice practitioners, pharmacists, a paediatric cardiothoracic surgeon, and a paediatric cardiac anaesthesiologist was convened. The literature was searched for relevant articles and Collaborative sites submitted centre-specific protocols for postoperative pain management. Using the modified Delphi technique, recommendations were generated and put through iterative Delphi rounds to achieve consensusResults:60 recommendations achieved consensus and are included in this guideline. They address guideline use, pain assessment, general considerations, preoperative considerations, intraoperative considerations, regional anaesthesia, opioids, opioid-sparing, non-opioid medications, non-pharmaceutical pain management, and discharge considerations.Conclusions:Postoperative pain among children following cardiac surgery is currently an area of significant practice variability despite a large body of literature and the presence of centre-specific protocols. Central to the recommendations included in this guideline is the concept that ideal pain management begins with preoperative counselling and continues through to patient discharge. Overall, the quality of evidence supporting recommendations is low. There is ongoing need for research in this area, particularly in paediatric populations.

Background: Guidelines recommend observation for atrioventricular node recovery until postoperative days (POD) 7 to 10 before permanent pacemaker placement (PPM) in patients with heart block after congenital cardiac surgery. To aid in surgical decision-making for early PPM, we established criteria to identify patients at high risk of requiring PPM. Methods: We reviewed all cases of second degree and complete heart block (CHB) on POD 0 from August 2009 through December 2018. A decision tree model was trained to predict the need for PPM amongst patients with persistent CHB and prospectively validated from January 2019 through March 2021. Separate models were developed for all patients on POD 0 and those without recovery by POD 4. Results: Of the 139 patients with postoperative heart block, 68 required PPM. PPM was associated with older age (3.2 versus 1.0 years; P =0.018) and persistent CHB on POD 0 (versus intermittent CHB or second degree heart block; 87% versus 58%; P =0.001). Median days [IQR] to atrioventricular node recovery was 2 [0–5] and PPM was 9 [6–11]. Of the 100 cases of persistent CHB (21 in the validation cohort), 59 (59%) required PPM. A decision tree model identified 4 risk factors for PPM in patients with persistent CHB: (1) aortic valve replacement, subaortic stenosis repair, or Konno procedure; (2) ventricular L-looping; (3) atrioventricular valve replacement; (4) and absence of preoperative antiarrhythmic agent (in POD 0 model only). The POD 4 model specificity was 0.89 [0.67–0.99] and positive predictive value was 0.94 [95% CI 0.81–0.98], which was stable in prospective validation (positive predictive value 1.0). Conclusions: A data-driven analysis led to actionable criteria to identify patients requiring PPM. Patients with left ventricular outflow tract surgery, atrioventricular valve replacement, or ventricular L-Looping could be considered for PPM on POD 4 to reduce risks of temporary pacing and improve care efficiency.

OBJECTIVES 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 sequencing-derived 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.

OBJECTIVES To characterize frontline provider perception of clinical text messaging and quantify clinical texting data in a pediatric cardiovascular ICU (CICU). METHODS This is a mixed-methods, retrospective single center study. A survey of frontline CICU providers (pediatric fellows, nurse practitioners, and physician assistants) was conducted to assess attitudes characterizing text messaging on cognitive burden. Text messaging data were abstracted and quantified between January 29, 2020, and April 18, 2020, and the patterns of text messages were analyzed per shift and by provider. RESULTS The survey was completed by 33 of 39 providers (85%). Out of responders, 78% indicated that clinical text messaging frequently or very frequently disrupts critical thinking and workflow. They also felt that the burden of messages was worse during the night shift. Through abstraction, 31 926 text messages were identified. A median of 15 (interquartile range: 12–19) messages per hour were received. A median of 5 messages were received per hour per provider during the day shift and 6 during the night shift. From the entire study period, there were total 2 hours of high-frequency texting (≥15 texts per hour) during the day shift and 68 hours during the night shift. CONCLUSION In our study, providers in the CICU received a large number of texts with a disproportionate burden during the night shift. Text messages are a potential source of cognitive overload for providers. Optimization of text messaging may be needed to mitigate cognitive burden for frontline providers.

Hypertrophic cardiomyopathy (HCM) has historically been diagnosed phenotypically. Through genetic testing, identification of a molecular diagnosis (MolDx) is increasingly common but the impact on pediatric patients is unknown. This was a retrospective study of next-generation sequencing data for 602 pediatric patients with a clinician-reported history of HCM. Diagnostic yield was stratified by gene and self-reported race/ethnicity. A MolDx of HCM was identified in 242 (40%) individuals. Sarcomeric genes were the highest yielding, but pathogenic and/or likely pathogenic (P/LP) variants in syndromic genes were found in 36% of individuals with a MolDx, often in patients without documented clinical suspicion for a genetic syndrome. Among all MolDx, 73% were in genes with established clinical management recommendations and 2.9% were in genes that conferred eligibility for clinical trial enrollment. Black patients were the least likely to receive a MolDx. In the current era, genetic testing can impact management of HCM, beyond diagnostics or prognostics, through disease-specific guidelines or clinical trial eligibility. Genetic testing frequently can help identify syndromes in patients for whom syndromes may not be suspected. These findings highlight the importance of pursuing broad genetic testing, independent of suspicion based on phenotype. Lower rates of MolDx in Black patients may contribute to health inequities. Further research is needed evaluating the genetics of HCM in underrepresented/underserved populations. Additionally, research related to the impact of genetic testing on clinical management of other diseases is warranted. Supplementary Information The online version contains supplementary material available at 10.1007/s00246-021-02764-1.

Assessment of supravalvar aortic stenosis (SVAS) severity in Williams syndrome (WS) is often complicated by the discrepancy in pressure drops obtained via peak-instantaneous Doppler and peak-to-peak cardiac catheterization measurements. With SVAS, static pressure in the left ventricle is converted to kinetic energy, maximal at the vena contracta, some of which is recovered through pressure energy and some of which is lost through thermal energy and deformation. The phenomenon …

The purpose of this study was to evaluate the prevalence of postoperative weight loss (WL) following radical cystectomy (RC) and its association with mortality. Nutritional status is recognized as a potential modifiable risk factor for postoperative complications following RC for bladder cancer. The American Society for Parenteral and Enteral Nutrition and the Academy of Nutrition and Dietetics recognize WL as a diagnostic measure for malnutrition.Seventy-one patients underwent RC for bladder cancer between July 2008 and July 2013, in whom peri-operative weights were documented regularly. The primary predictor variable was substantial WL defined as ≥ 10% WL by postoperative month 1. Survival was estimated using Kaplan-Meier analysis; logistic regression was used for multivariate analyses.Mean postoperative WL at 2 weeks was 9.5 lbs (-5.2%), 14.3 lbs (-7.8%) at 1 month, 16.9 lbs (-9.0%) at 2 months, 12.6 lbs (-6.9%) at 3 months, and 8.9 lbs (-4.6%) at 4 months. Forty-two percent of patients met criteria for substantial WL. At 19 months median follow-up, the overall mortality rate was 31% (22 of 71), which rose to 64% (14 of 22) in patients who experienced substantial WL (P .05). Substantial WL trended towards significance on multivariate analysis (P = .07). There was a significant decrease in 5-year survival in patients with ≥ 10% WL (log rank P .05).Patients experience WL following RC, which may be indicative of malnutrition. Substantial WL may predict for poor overall survival. Prospective studies are needed to determine whether nutritional optimization can prevent significant WL and improve outcomes.