Pediatric and Congenital Cardiac Care: Volume 1: Outcomes Analysis

Front Matter....Pages i-xxii
Front Matter....Pages 1-1
Introduction....Pages 3-8
Introduction: The History of Statistics in Medicine and Surgery....Pages 9-25
Introduction: Using Data to Drive Change and Improvement: The Legacy of Florence Nightingale....Pages 27-29
Introduction: Quality Improvement and Databases in the Context of Professionalism....Pages 31-32
Front Matter....Pages 33-33
Nomenclature for Congenital and Pediatric Cardiac Disease: Historical Perspectives and the International Pediatric and Congenital Cardiac Code....Pages 35-50
Defining Terms in Lists of Nomenclature....Pages 51-61
Illustrating Terms in Lists of Nomenclature....Pages 63-74
Front Matter....Pages 75-75
Databases for Assessing the Outcomes of the Treatment of Patients with Congenital and Pediatric Cardiac Disease: The Perspective of Cardiac Surgery....Pages 77-125
Databases for Assessing the Outcomes of the Treatment of Patients with Congenital and Pediatric Cardiac Disease: The Perspective of Cardiology....Pages 127-140
Databases for Assessing the Outcomes of the Treatment of Patients with Congenital and Pediatric Cardiac Disease: The Perspective of Anesthesia....Pages 141-153
Databases for Assessing the Outcomes of the Treatment of Patients with Congenital and Pediatric Cardiac Disease: The Perspective of Critical Care....Pages 155-162
Early Database Initiatives: The Fyler Codes....Pages 163-169
The Academic Database: Lessons Learned from the Congenital Heart Surgeons’ Society Data Center....Pages 171-184
Clinical Versus Administrative Data....Pages 185-191
Databases for Pediatric Cardiac Transplantation: The United Network for Organ Sharing/Scientific Registry of Transplant Recipients (UNOS/SRTR) and the Pediatric Heart Transplant Study (PHTS)....Pages 193-210
Databases for Extracorporeal Membrane Oxygenation and Ventricular Assist Devices....Pages 211-218
The United Kingdom National Congenital Heart Disease Audit....Pages 219-230
The Pediatric Cardiac Care Consortium: The End of an Era and Beginning of a New Mission....Pages 231-241
Pediatric Cardiac Catheterization Databases....Pages 243-257
Pediatric Electrophysiology Databases....Pages 259-266
Front Matter....Pages 75-75
Using Data to Drive Improvement and Build the Science of Nursing....Pages 267-285
Data Standards of the American College of Cardiology Foundation (ACCF) and the American Heart Association (AHA) and the Universal Pediatric Cardiac Dataset....Pages 287-294
Ethical Issues Confronting Outcomes Analysis and Quality Assurance....Pages 295-303
Front Matter....Pages 305-305
Statistical Issues in the Analysis and Interpretation of Outcomes for Congenital Cardiac Surgery....Pages 307-317
Real Time Monitoring of Risk-Adjusted Surgical Outcomes for Congenital Heart Disease....Pages 319-326
Risk Adjustment for Congenital Heart Surgery -1 (RACHS-1) for Evaluation of Mortality in Children Undergoing Cardiac Surgery....Pages 327-336
The Aristotle Complexity Score: A Tool to Evaluate Performance in Congenital Heart Surgery....Pages 337-361
Empirically Based Tools for Analyzing Mortality and Morbidity Associated with Congenital Heart Surgery....Pages 363-375
Front Matter....Pages 377-377
Verification of Data Completeness and Accuracy....Pages 379-391
Front Matter....Pages 393-393
Linking Databases....Pages 395-399
Front Matter....Pages 401-401
Use of National Death Registries to Empower Databases in Reporting Longitudinal Follow-Up....Pages 403-412
Quality of Life: The Need for a National Database....Pages 413-433
Longitudinal Follow-Up Studies in the Pediatric Heart Network....Pages 435-443
The Value of National Institutes of Health (NIH) Registry-Based Research in Identifying Childhood Cardiac Disease Outcomes: The Pediatric Cardiomyopathy Registry Experience....Pages 445-463
Front Matter....Pages 465-465
Public Reporting of Cardiac Data: Pros, Cons, and Lessons for the Future....Pages 467-477
Public Reporting of Pediatric Cardiac Data....Pages 479-489
Communication Chaos: How Incomplete and Conflicting Information Prevents Improved Outcomes for Patients with Pediatric and Congenital Cardiac Disease (and What We Can Do About It)....Pages 491-505
Back Matter....Pages 507-515