Human-centered design strategies in family and staff preparation for neonatal care.

Objective: This paper describes human-centered design strategies used to develop solutions for neonatal intensive care unit (NICU) patients, families, and staff in preparation for transition from an open bay (OB) NICU to a single-family room (SFR) NICU.

Human-centered Design: Through a series of user group meetings, an interdisciplinary team of NICU families, administrators, providers, nurses, and other care team members (CTMs) collaborated with design professionals to create and carry out their vision for the new NICU. This process, which spanned the design, construction, and transition planning phases of the project, enabled stakeholders at the Medical University of South Carolina in Charleston, South Carolina (USA) to seek solutions for integrating patient and family-centered care into the fabric of its new facility and to redesign the care experience.

Registry-based trials: a potential model for cost savings?

Background/aims: Registry-based trials have emerged as a potentially cost-saving study methodology. Early estimates of cost savings, however, conflated the benefits associated with registry utilisation and those associated with other aspects of pragmatic trial designs, which might not all be as broadly applicable. In this study, we sought to build a practical tool that investigators could use across disciplines to estimate the ranges of potential cost differences associated with implementing registry-based trials versus standard clinical trials.

Improvement in Pediatric Cardiac Surgical Outcomes Through Interhospital Collaboration.

Background: Patients undergoing complex pediatric cardiac surgery remain at considerable risk of mortality and morbidity, and variation in outcomes exists across hospitals. The Pediatric Cardiac Critical Care Consortium (PC4) was formed to improve the quality of care for these patients through transparent data sharing and collaborative learning between participants.

Objectives: The purpose of this study was to determine whether outcomes improved over time within PC4.

Enhancing efficiency and scientific impact of a clinical trials network: the Pediatric Heart Network Integrated CARdiac Data and Outcomes (iCARD) Collaborative.

Recent years have seen an exponential increase in the variety of healthcare data captured across numerous sources. However, mechanisms to leverage these data sources to support scientific investigation have remained limited. In 2013 the Pediatric Heart Network (PHN), funded by the National Heart, Lung, and Blood Institute, developed the Integrated CARdiac Data and Outcomes (iCARD) Collaborative with the goals of leveraging available data sources to aid in efficiently planning and conducting PHN studies; supporting integration of PHN data with other sources to foster novel research otherwise not possible; and mentoring young investigators in these areas.

Hospital Costs Related to Early Extubation After Infant Cardiac Surgery.

Background: The Pediatric Heart Network Collaborative Learning Study (PHN CLS) increased early extubation rates after infant tetralogy of Fallot (TOF) and coarctation of the aorta (CoA) repair across participating sites by implementing a clinical practice guideline (CPG). The impact of the CPG on hospital costs has not been studied.

Methods: PHN CLS clinical data were linked to cost data from Children's Hospital Association by matching on indirect identifiers.

Out-of-pocket medical expenses in severe CHD.

Unlabelled: IntroductionFamilies of children born with CHD face added stress owing to uncertainty about the magnitude of the financial burden for medical costs they will face. This study seeks to assess the family responsibility for healthcare bills during the first 12 months of life for commercially insured children undergoing surgery for severe CHD.

Methods: The MarketScan ® database from Truven was used to identify commercially insured infants in 39 states from 2010 to 2012 with an ICD-9 diagnosis code for transposition of the great arteries, tetralogy of Fallot, or truncus arteriosus, as well as the corresponding procedure code for complete repair.

Cost Variation Across Centers for the Norwood Operation.

Background: The Norwood operation is associated with high health care utilization, and prior studies reported substantial variability in Norwood costs across centers. However, specific factors driving this cost variation are unclear. We assessed center variability in Norwood costs and underlying mechanisms in a multicenter cohort.

Duration of Postoperative Mechanical Ventilation as a Quality Metric for Pediatric Cardiac Surgical Programs.

Background: Few metrics exist to assess quality of care at pediatric cardiac surgical programs, limiting opportunities for benchmarking and quality improvement. Postoperative duration of mechanical ventilation (POMV) may be an important quality metric because of its association with complications and resource utilization. In this study we modelled case-mix-adjusted POMV duration and explored hospital performance across POMV metrics.

Clinical epidemiology and centre variation in chylothorax rates after cardiac surgery in children: a report from the Pediatric Cardiac Critical Care Consortium.

Unlabelled: Introduction Chylothorax after paediatric cardiac surgery incurs significant morbidity; however, a detailed understanding that does not rely on single-centre or administrative data is lacking. We described the present clinical epidemiology of postoperative chylothorax and evaluated variation in rates among centres with a multicentre cohort of patients treated in cardiac ICU.

Methods: This was a retrospective cohort study using prospectively collected clinical data from the Pediatric Cardiac Critical Care Consortium registry.

Interpreting measurements of cardiac function using vendor-independent speckle tracking echocardiography in children: a prospective, blinded comparison with catheter-derived measurements.

Background: Adult studies demonstrate that echocardiographic measurements of cardiac function using speckle tracking correlate with invasive measurements, but such data in the pediatric population are sparse. Our aim was to compare speckle-derived measures of cardiac function to measurements routinely obtained by cardiac catheterization in children.

Methods: Echocardiograms were performed on the day of cardiac catheterization.

Utilizing a Collaborative Learning Model to Promote Early Extubation Following Infant Heart Surgery.

Objective: To determine whether a collaborative learning strategy-derived clinical practice guideline can reduce the duration of endotracheal intubation following infant heart surgery.

Design: Prospective and retrospective data collected from the Pediatric Heart Network in the 12 months pre- and post-clinical practice guideline implementation at the four sites participating in the collaborative (active sites) compared with data from five Pediatric Heart Network centers not participating in collaborative learning (control sites).

Setting: Ten children's hospitals.

Impact of postoperative complications on hospital costs following the Norwood operation.

Unlabelled: Introduction Patients undergoing the Norwood operation consume considerable healthcare resources; however, detailed information regarding factors impacting hospitalisation costs is lacking. We evaluated the association of postoperative complications with hospital costs.

Methods: In the present study, we utilised a unique data set consisting of prospectively collected clinical data from the Pediatric Heart Network Single Ventricle Reconstruction trial linked at the patient level with cost data for 10 hospitals participating in the Children's Hospital Association Case Mix database during the trial period.

Great need, scarce resources, and choice: reflections on ethical issues following a medical mission.

Medical missions to provide cardiac surgical procedures in developing and technologically less advanced countries is a great challenge. It is also immensely gratifying, personally and professionally. Such missions typically present significant ethical dilemmas, especially making difficult choices, given limited time and resources, and the inability to help all children in need of cardiac surgery.

Current Practice and Utility of Chromosome Microarray Analysis in Infants Undergoing Cardiac Surgery.

Objective: Traditionally, karyotype and fluorescence in situ hybridization (FISH) were used for cytogenetic testing of infants with congenital heart disease (CHD) who underwent cardiac surgery at our institution. Recently, chromosome microarray analysis (CMA) has been performed in lieu of the traditional tests. A standardized approach to cytogenetic testing does not exist in this population.

Collaborative quality improvement in the cardiac intensive care unit: development of the Paediatric Cardiac Critical Care Consortium (PC4).

Despite many advances in recent years for patients with critical paediatric and congenital cardiac disease, significant variation in outcomes remains across hospitals. Collaborative quality improvement has enhanced the quality and value of health care across specialties, partly by determining the reasons for variation and targeting strategies to reduce it. Developing an infrastructure for collaborative quality improvement in paediatric cardiac critical care holds promise for developing benchmarks of quality, to reduce preventable mortality and morbidity, optimise the long-term health of patients with critical congenital cardiovascular disease, and reduce unnecessary resource utilisation in the cardiac intensive care unit environment.

Association of human leukocyte antigen donor-recipient matching and pediatric heart transplant graft survival.

Background: The effect of donor-recipient human leukocyte antigen (HLA) matching on outcomes remains relatively unexplored in pediatric patients. The objective of this study was to investigate the effects of donor-recipient HLA matching on graft survival in pediatric heart transplantation.

Methods And Results: The UNOS (United Network for Organ Sharing) database was queried for heart transplants occurring between October 31, 1987, and December 31, 2012, in a recipient aged ≤17 years with ≥1 postoperative follow-up visit.

Cardiopulmonary bypass after severe blunt hepatic injury: management of multi-system blunt trauma in an adolescent.

A 16-year-old adolescent male sustained combined injuries to the tricuspid valve and liver. This injury is exceptional due to the mechanism and the circumstances in which it took place: a flying pumpkin thrown from a sport utility vehicle. An echocardiogram demonstrated a flail chordal apparatus associated with the posterior leaflet of the tricuspid valve, creating substrate for severe tricuspid regurgitation with preserved right heart function.

A composite outcome for neonatal cardiac surgery research.

Objective: The objective of this study was to determine whether a composite outcome, derived of objective signs of inadequate cardiac output, would be associated with other important measures of outcomes and therefore be an appropriate end point for clinical trials in neonatal cardiac surgery.

Methods: Neonates (n = 76) undergoing cardiac operations requiring cardiopulmonary bypass were prospectively enrolled. Patients were defined to have met the composite outcome if they had any of the following events before hospital discharge: death, the use of mechanical circulatory support, cardiac arrest requiring chest compressions, hepatic injury (2 times the upper limit of normal for aspartate aminotransferase or alanine aminotransferase), renal injury (creatinine >1.

Extracorporeal membrane oxygenation after stage 1 palliation for hypoplastic left heart syndrome.

Objective: To report the outcomes from a large multicenter cohort of neonates requiring extracorporeal membrane oxygenation (ECMO) after stage 1 palliation for hypoplastic left heart syndrome.

Methods: Using data from the Extracorporeal Life Support Organization (2000-2009), we computed the survival to hospital discharge for neonates (age ≤30 days) supported with ECMO after stage 1 palliation for hypoplastic left heart syndrome. The factors associated with mortality were evaluated using multivariate logistic regression analysis.

Comparison of maximum vasoactive inotropic score and low cardiac output syndrome as markers of early postoperative outcomes after neonatal cardiac surgery.

Low cardiac output syndrome (LCOS) and maximum vasoactive inotropic score (VIS) have been used as surrogate markers for early postoperative outcomes in pediatric cardiac surgery. The objective of this study was to determine the associations between LCOS and maximum VIS with clinical outcomes in neonatal cardiac surgery. This was a secondary retrospective analysis of a prospective randomized trial, and the setting was a pediatric cardiac intensive care unit in a tertiary care children's hospital.

Risk factors for failed staged palliation after bidirectional Glenn in infants who have undergone stage one palliation.

Objective: The bidirectional Glenn procedure (BDG) is a routine intermediary step in single-ventricle palliation. In this study, we examined risk factors for death or transplant and failure to reach Fontan completion after BDG in patients, who had previously undergone stage one palliation (S1P).

Methods: All patients at our institution, who underwent BDG following S1P between 2002 and 2009 (n=194), were included in the analysis.

Blood transfusion after pediatric cardiac surgery is associated with prolonged hospital stay.

Background: Red blood cell transfusion is associated with morbidity and mortality among adults undergoing cardiac surgery. We aimed to evaluate the association of transfusion with morbidity among pediatric cardiac surgical patients.

Methods: Patients discharged after cardiac surgery in 2003 were retrospectively reviewed.

Rapid-response extracorporeal membrane oxygenation to support cardiopulmonary resuscitation in children with cardiac disease.

Background: Survival of children with in-hospital cardiac arrest that does not respond to conventional cardiopulmonary resuscitation (CPR) is poor. We report on survival and early neurological outcomes of children with heart disease supported with rapid-response extracorporeal membrane oxygenation (ECMO) to aid cardiopulmonary resuscitation (ECPR).

Methods And Results: Children with heart disease supported with ECPR were identified from our ECMO database.