Pediatric and Congenital Cardiac Care

Volume 1: Outcomes Analysis
 
 
Springer (Verlag)
  • erschienen am 4. Dezember 2014
  • |
  • XXII, 515 Seiten
 
E-Book | PDF mit Wasserzeichen-DRM | Systemvoraussetzungen
978-1-4471-6587-3 (ISBN)
 
There are growing questions regarding the safety, quality, risk management, and costs of PCC teams, their training and preparedness, and their implications on the welfare of patients and families. This innovative book, authored by an international authorship, will highlight the best practices in improving survival while paving a roadmap for the expected changes in the next 10 years as healthcare undergoes major transformation and reform. An invited group of experts in the field will participate in this project to provide the timeliest and informative approaches to how to deal with this global health challenge. The book will be indispensable to all who treat pediatric cardiac disease and will provide important information about managing the risk of patients with pediatric and congenital cardiac disease in the three domains of: the analysis of outcomes, the improvement of quality, and the safety of patients.
2015
  • Englisch
  • London
  • |
  • Großbritannien
  • 48 s/w Abbildungen, 52 farbige Abbildungen
  • |
  • 48 schwarz-weiße und 52 farbige Abbildungen, Bibliographie
  • 18,69 MB
978-1-4471-6587-3 (9781447165873)
10.1007/978-1-4471-6587-3
weitere Ausgaben werden ermittelt
  • Intro
  • Foreword
  • Preface
  • Acknowledgments
  • Contents
  • Contributors
  • Part I: Introduction
  • 1: Introduction
  • References
  • 2: Introduction: The History of Statistics in Medicine and Surgery
  • Uncertainty
  • Confidence Limits
  • P Values
  • Human Error
  • Understanding Surgical Failure
  • A Mathematical Framework for Risk
  • Incremental Risk Factor Concept
  • Philosophy
  • Continuity Versus Discontinuity in Nature
  • Linearity Versus Nonlinearity
  • Nihilism Versus Predictability
  • Parsimony Versus Complexity
  • Nomograms
  • Effectiveness, Appropriateness, Timing, and Indications for Intervention
  • Time-Related Events
  • Repeatable Events
  • Competing Risks
  • Weighted Events
  • Longitudinal Data Analysis
  • Comparison of Treatments
  • Clinical Trials with Randomly Assigned Treatment
  • Clinical Studies with Nonrandomly Assigned Treatment
  • Where Have We Been and Where Are We Headed?
  • References
  • 3: Introduction: Using Data to Drive Change and Improvement: The Legacy of Florence Nightingale
  • Reference
  • 4: Introduction: Quality Improvement and Databases in the Context of Professionalism
  • References
  • Part II: Nomenclature and Taxonomies
  • 5: Nomenclature for Congenital and Pediatric Cardiac Disease: Historical Perspectives and the International Pediatric and Congenital Cardiac Code
  • Introduction
  • History of the Classification of Disease [13]
  • Pediatric and Congenital Cardiac Nomenclature and the International Pediatric and Congenital Cardiac Code
  • Further Developments Related to the IPCCC
  • Crossmapping Issues and the Development of Crossmapping Rules
  • The Electronic Health Record and the Systematized Nomenclature of Medicine Clinical Terms (SNOMED-CT)
  • The 11th Revision of the International Classification of Diseases (ICD-11)
  • Differences Between Clinical and Administrative Nomenclature
  • Conclusions
  • References
  • 6: Defining Terms in Lists of Nomenclature
  • Introduction
  • The Problem
  • The Solution
  • Conclusion
  • References
  • 7: Illustrating Terms in Lists of Nomenclature
  • Introduction
  • Historical Background
  • Illustration of the Terms of the IPCCC
  • Summary
  • References
  • Part III: Databases
  • 8: Databases for Assessing the Outcomes of the Treatment of Patients with Congenital and Pediatric Cardiac Disease: The Perspective of Cardiac Surgery
  • Introduction
  • Nomenclature
  • Database
  • Complexity Stratification
  • Data Verification
  • Subspecialty Collaboration
  • Longitudinal Follow-Up
  • Quality Assessment and Quality Improvement
  • Summary: Bridging the Gap Form Analysis of Outcomes to Improvement of Quality
  • References
  • 9: Databases for Assessing the Outcomes of the Treatment of Patients with Congenital and Pediatric Cardiac Disease: The Perspective of Cardiology
  • Background, History and Current Status
  • Database History
  • Database Architecture
  • On-Line Transactional Processing System
  • On-Line Analytical Processing System (Data Warehouse)
  • Registry Interface
  • On-Line Semantics Processing (OLSP) System
  • Artificial Intelligence
  • The Cloud
  • Summary
  • References
  • 10: Databases for Assessing the Outcomes of the Treatment of Patients with Congenital and Pediatric Cardiac Disease: The Perspective of Anesthesia
  • Background
  • Multi-Societal Collaboration
  • The Joint Congenital Cardiac Anesthesia Society-Society of Thoracic Surgeons Congenital Cardiac Anesthesia Database
  • Joint CCAS-STS Congenital Cardiac Anesthesia Database: Mechanisms
  • Joint CCAS-STS Congenital Cardiac Anesthesia Database: Data Reporting and Analysis
  • Joint CCAS-STS Congenital Cardiac Anesthesia Database: Dataset Management
  • Joint CCAS-STS Congenital Cardiac Anesthesia Database: Results
  • Difficult Intubation
  • Arterial and Venous Line Placement and Complications
  • Future Developments and the Unique Patient Identifier
  • Conclusion
  • References
  • 11: Databases for Assessing the Outcomes of the Treatment of Patients with Congenital and Pediatric Cardiac Disease: The Perspective of Critical Care
  • Introduction
  • Challenges to Measuring Outcomes and Quality of Care
  • Heterogeneous Patient Populations
  • Defining Critical Care Patient Quality Outcomes and Quality Metrics
  • Risk Adjustment
  • The "Ideal" Cardiac Critical Care Database
  • Common Nomenclature
  • Linking Databases
  • Existing Critical Care Databases
  • Virtual PICU Systems (VPS) Database
  • The Future of Cardiac Critical Care Databases
  • Conclusion
  • References
  • 12: Early Database Initiatives: The Fyler Codes
  • Introduction
  • Medical Record Keeping in the Nascent Electronic Era
  • Numeric Versus Text Codes
  • Intrinsic Hierarchy Based on Numeric Order
  • Code Organization Based on Alphanumeric Representation
  • Atomic Versus Molecular Design
  • Provisions for Expansion and Modification of the Coding System
  • Coding Data Capture Workflow
  • Lessons Learned
  • References
  • 13: The Academic Database: Lessons Learned from the Congenital Heart Surgeons' Society Data Center
  • Background
  • CHSS Data Center Structure
  • Personnel
  • Legal/Ethical Issues
  • Communication
  • Work Weekends
  • Finances
  • Voluntary Contribution of Data
  • Centralized Abstraction of Data
  • The Kirklin/Ashburn Fellowship
  • Research Strategies in the CHSS Data Center
  • The Research Question
  • Focus on Diagnosis-Based Inception Cohorts
  • Data Entry
  • Data Integrity (The Essential Underappreciated Integral Step)
  • Diagnostic Images
  • Evaluation of Uncommon Lesions
  • Data Analysis
  • Complex Cohorts Require Complex Statistical Techniques
  • Evolution of Statistical Techniques
  • Statistical Techniques in Use at the CHSS Data Center
  • Parametric Hazard Phase Decomposition
  • Time Zero
  • Advantages of Parametric Hazard Analysis
  • Competing Risks
  • Segmentation of Longitudinal Records to Facilitate Analysis
  • Propensity Score Matching
  • Modulated Renewal
  • Scoring Systems Based on Common Dataset Integrated Parametric Models
  • Conclusion
  • References
  • 14: Clinical Versus Administrative Data
  • Background
  • Types of Datasets
  • Clinical Registries/Databases
  • Administrative Datasets
  • Strengths and Weaknesses of Clinical vs. Administrative Datasets
  • Case Ascertainment
  • Risk Adjustment
  • Outcomes Assessment
  • Conclusions
  • References
  • 15: 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)
  • Introduction
  • The UNOS/SRTR Database
  • Historical Background
  • Data Collection
  • Data Access and Analysis
  • Pediatric Heart Transplant Study
  • Historical Background
  • Data Collection
  • Data Access and Analysis
  • Other Databases Including Pediatric Transplant Data
  • International Society for Heart and Lung Transplantation (ISHLT) Registry
  • INTERMACS/PEDIMACS
  • Society of Thoracic Surgeons Congenital Heart Surgery Database (STS-CHSD)
  • Outcomes Analysis in Pediatric Cardiac Transplantation Using Large Datasets
  • Prediction of Individual Risk
  • Models of Risk on the Waitlist
  • Models of Risk of Mortality After Transplantation
  • Summary
  • Assessment of Individual Transplant Centers
  • Evaluation of National Policies and Rules of Allocation
  • Interpreting Data Analysis in UNOS/SRTR and PHTS Studies
  • Handling of Missing Data
  • Accuracy of Logistic Regression Models
  • Future Directions
  • Conclusion
  • References
  • 16: Databases for Extracorporeal Membrane Oxygenation and Ventricular Assist Devices
  • Introduction
  • ELSO Registry
  • Extracorporeal Membrane Oxygenation
  • ECMO Registry of ELSO
  • Uses for ECMO Registry Data
  • Ventricular Assist Device Database
  • Conclusions
  • References
  • 17: The United Kingdom National Congenital Heart Disease Audit
  • Introduction
  • Data Collection
  • Verification of Life Status and Validation of Data
  • Procedural Activity and Mortality Tracking
  • Risk Adjusted Outcomes
  • Publication of NCHDA Analyses and Quality Assurance
  • Antenatal Diagnosis of Congenital Heart Malformations
  • Future Developments and Conclusions
  • References
  • 18: The Pediatric Cardiac Care Consortium: The End of an Era and Beginning of a New Mission
  • Introduction
  • The Database
  • Contribution to the Field of Congenital Heart Disease
  • Future of the PCCC
  • Conclusion
  • Appendix 18.1: Diagnostic Codes of Atrial Septal Defect
  • Appendix 18.2: Surgical Codes of Atrial Septal Defect
  • Appendix 18.3: Qualifying Codes
  • References
  • 19: Pediatric Cardiac Catheterization Databases
  • IMPACT RegistryTM (IMproving Pediatric and Adult Congenital Treatment)
  • Overview
  • Data Collection and Reporting
  • Data
  • Future Directions
  • Congenital Cardiac Catheterization Project on Outcomes (C3PO)
  • Overview
  • C3PO Data Collection and Reporting
  • C3PO Development of Outcome Assessment Tools
  • Procedure-Type Risk Categories
  • Hemodynamic Vulnerability
  • CHARM
  • Efficacy and Outcome Assessment
  • Future Directions
  • Congenital Cardiovascular Interventional Study Consortium
  • Overview
  • Data Collection and Reporting
  • Methodology
  • Future Directions
  • The Mid-Atlantic Group of Interventional Cardiology (MAGIC) Catheterization Outcomes Project
  • Overview
  • Data Collection and Reporting
  • Results
  • Atrial Septal Device Closure
  • Patent Ductus Arteriosus Device Closure
  • Pulmonary Hypertension
  • Future Directions
  • Summary
  • References
  • 20: Pediatric Electrophysiology Databases
  • Introduction
  • Unique Aspects of Outcomes Analysis and Quality Improvement in Electrophysiology
  • The History of Electrophysiology Databases
  • The Pediatric Radiofrequency Catheter Ablation Registry (1991-1999)
  • Prospective Assessment After Pediatric Cardiac Ablation (PAPCA) (1999-2003)
  • The Multicenter Pediatric and Adult Congenital EP Quality (MAP-IT) Registry
  • Looking Ahead: MAP-IT Pilot Testing and the IMPACT Registry
  • Conclusions
  • References
  • 21: Using Data to Drive Improvement and Build the Science of Nursing
  • Introduction
  • Defining Quality Care
  • Nursing and the Linkage to Patient Outcomes
  • Developing Quality Nursing Measures
  • Adult Versus Pediatric Measures
  • Ongoing National Database of Nursing Quality Indicators (NDNQI)
  • Ohio Children's Hospitals' Solutions for Patient Safety (OCHSPS)
  • Pediatric Cardiovascular Nursing Initiatives
  • National Pediatric Cardiovascular Nursing Collaboration
  • Consortium for Congenital Cardiac Care Measurement of Nursing Practice (C4-MNP)
  • Using Evidence to Guide Quality Nursing Care
  • Kid's Inpatient Database (KID) and the Pediatric Health Information Systems (PHIS)
  • Using Evidence to Impact Patient Outcomes
  • Improving Patient Safety with the Red Zone Medication Safety Initiative
  • Rescuing Patients Using the Children's Hospital Early Warning Score (CHEWS)
  • Measuring the Complexity and Autonomy of Nursing Care in the Pediatric Cardiac Intensive Care Unit Using the Complexity Assessment & Monitoring to Ensure Optimal Outcomes (CAMEO)
  • Pressure Ulcer Prevention using the Standardized Clinical Assessment and Management Plan (SCAMPs) Methodology
  • Future Directions for Building the Science
  • References
  • 22: Data Standards of the American College of Cardiology Foundation (ACCF) and the American Heart Association (AHA) and the Universal Pediatric Cardiac Dataset
  • Background
  • The American College of Cardiology Foundation (ACCF) and the American Heart Association (AHA) Task Force on Data Standards
  • Vision for the Future
  • References
  • 23: Ethical Issues Confronting Outcomes Analysis and Quality Assurance
  • Historical Perspective
  • The Ethical Issues
  • Analogues in Adult Cardiac Surgery
  • Congenital Heart Surgery Outcomes Reporting as a Unique Dilemma
  • Conclusion
  • References
  • Part IV: Stratification of Complexity
  • 24: Statistical Issues in the Analysis and Interpretation of Outcomes for Congenital Cardiac Surgery
  • Introduction
  • Risk Adjustment
  • Considerations for Variable Selection for Risk Adjustment
  • Unadjusted Outcomes as Weighted Averages
  • Stratification
  • Direct Standardization
  • Indirect Standardization
  • Model-Based Standardization
  • The Problem of Small Sample Sizes
  • Prediction Intervals
  • Interval Estimates
  • Bayesian Inference
  • Summary
  • References
  • 25: Real Time Monitoring of Risk-­Adjusted Surgical Outcomes for Congenital Heart Disease
  • The Cumulative Sum Chart (CUSUM Chart)
  • Variable Life Adjusted Display (VLAD) Charts: Comparison with Other Methods of Audit
  • An Example of VLAD Chart Use for Real Time Monitoring of Risk-­Adjusted Surgical Outcomes from the UK
  • Discussion of VLAD Charts for Real Time Monitoring of Risk-Adjusted Outcomes in 'Wider Context'
  • References
  • 26: Risk Adjustment for Congenital Heart Surgery -1 (RACHS-1) for Evaluation of Mortality in Children Undergoing Cardiac Surgery
  • Introduction
  • RACHS-1 Method
  • Components of RACHS-1
  • RACHS-1 Performance
  • Comparison of RACHS-1 with Other Risk Adjustment Methods
  • Use of RACHS-1 Method
  • Limitations
  • Summary
  • Appendix 1: The Risk Adjustment for Congenital Heart Surgery (RACHS-1) Categories (January 1, 2010)
  • References
  • 27: The Aristotle Complexity Score: A Tool to Evaluate Performance in Congenital Heart Surgery
  • Introduction
  • Current Aristotle Score
  • Definition of Performance
  • The Concept of Complexity
  • Why Technical Difficulty?
  • Results of the Aristotle Score
  • Validation of the Aristotle Score
  • Limitation of the Current Aristotle Scores
  • New Aristotle 2 Scores
  • From Subjective to Objective Evaluation: The STAT Mortality Score and the STAT Morbidity Score
  • Timing
  • Adults with Congenital Cardiac Disease
  • Simplification of the Aristotle Scores
  • Performance Measurements
  • Contributions of the Aristotle Score Towards the Development of Newer Tools to Evaluate Cardiac Surgical Performance
  • Conclusion
  • Appendix 1: The Aristotle Basic Complexity Score (ABC Score) and the Aristotle Basic Complexity Levels (ABC Levels) (January 1, 2010)
  • References
  • 28: Empirically Based Tools for Analyzing Mortality and Morbidity Associated with Congenital Heart Surgery
  • Introduction
  • Consensus-Based Tools for Complexity Stratification
  • An Empirically Based Tool for Analyzing Mortality Associated with Congenital Heart Surgery
  • An Empirically Based Tool for Analyzing Morbidity Associated with Congenital Heart Surgery
  • Conclusion
  • Appendix 1: The Society of Thoracic Surgeons - European Association for Cardio-Thoracic Surgery Congenital Heart Surgery Mortality Scores and Mortality Categories (STAT Mortality Categories) (October 31, 2012)
  • References
  • Part V: Verification of Data Completeness and Accuracy of Data
  • 29: Verification of Data Completeness and Accuracy
  • The Impact of Missing or Inaccurate Data
  • Principles of Data Verification
  • Methods of Data Verification
  • A Data Verification Process: The STS Congenital Heart Surgery Database
  • Pre-site Visit
  • On Site Audit Procedures
  • Post-site Visit
  • Verification of Data Using Additional External Sources of Data Such National Registries of Death
  • Conclusion
  • References
  • Part VI: Subspecialty Collaboration
  • 30: Linking Databases
  • Introduction
  • Rationale for Linking Databases
  • Mechanisms for Linking Data
  • Linking on Unique Identifiers
  • Linking on Indirect Identifiers
  • Center-Level Linkages
  • Supplementary Data Modules
  • Collaboration/Partnering Between Databases
  • Future Directions
  • Conclusions
  • References
  • Part VII: Longitudinal Follow-Up
  • 31: Use of National Death Registries to Empower Databases in Reporting Longitudinal Follow-Up
  • National Death Registries
  • The National Death Index of the United States of America
  • Social Security Administration Death Master File (Index)
  • The Social Security Administration Vital Status Service
  • Which National Death Registry Is Better?
  • Accuracy
  • Accessibility
  • Cost
  • Future Challenges
  • References
  • 32: Quality of Life: The Need for a National Database
  • Introduction
  • Health Measurement Definitions: QOL and HRQOL
  • Inherent Difficulties of HRQOL Evaluation in the Pediatric HD Population
  • HRQOL Instrument Evaluation
  • Existing Generic and Disease-­Specific HRQOL Measures That May Be Used to Assess HRQOL in the Pediatric HD Population
  • Research on HRQOL in Pediatric Patients with HD: What Is Known
  • HRQOL Studies in the General CHD Population
  • Health Status and Functional Status in the HD Population
  • HRQOL in the HD Population
  • HRQOL Studies in Specific HD Subgroups
  • Predictors of HRQOL in the Pediatric HD Population
  • Neurodevelopmental Predictors of HRQOL in the Pediatric HD Population
  • Psychosocial Predictors of HRQOL in the Pediatric HD Population
  • Summary
  • Clinical Implementation (Is HRQOL Evaluation Utilized in Clinical Practice?)
  • Research Agenda (What Is Needed in HRQOL Research in Pediatric HD Patients?)
  • Clinical Agenda (What Is Needed to Harness the Potential of HRQOL Assessment for Clinical Use in Pediatric HD Patients?)
  • The Relationship of Quality of Life, Safety, and Value
  • Quality of Life National Registry
  • Conclusion
  • References
  • 33: Longitudinal Follow-Up Studies in the Pediatric Heart Network
  • Structure of the PHN
  • PHN Studies
  • Longitudinal Fontan Studies
  • Single Ventricle Reconstruction Trial
  • Marfan Trial
  • Challenges
  • Selection of a Primary Endpoint
  • Estimation of Sample Size and Subject Availability
  • Subject Recruitment and Retention
  • Conclusions
  • References
  • 34: The Value of National Institutes of Health (NIH) Registry-Based Research in Identifying Childhood Cardiac Disease Outcomes: The Pediatric Cardiomyopathy Registry Experience
  • Introduction
  • The Significance of Pediatric Cardiomyopahty as a Rare Disease
  • The Design and Operation of the Registry
  • The Epidemiology of Cardiomyopathy
  • The Incidence of Pediatric Cardiomyopathy
  • Genetic and Viral Associations
  • Outcomes of Cardiomyopathy by Phenotype
  • Dilated Cardiomyopathy
  • Hypertrophic Cardiomyopathy
  • Restrictive Cardiomyopathy
  • Left Ventricular Non-compaction
  • Outcomes of Cardiomyopathy by Cause
  • Treating Pediatric Cardiomyopathy
  • Medical Treatment of Pediatric Cardiomyopathy
  • Surgical Treatment of Pediatric Cardiomyopathy
  • Nutritional Status of Children with Cardiomyopathy
  • Functional Status of Children with Cardiomyopathy
  • International Conferences on Pediatric Cardiomyopathy
  • Future Directions of the Pediatric Cardiomyopathy Registry
  • Conclusions
  • References
  • Part VIII: Public Reporting of Data
  • 35: Public Reporting of Cardiac Data: Pros, Cons, and Lessons for the Future
  • Hospital Quality Improvement Activities Triggered by Public Reporting
  • Changes in Cardiac Outcomes
  • Avoidance of High-Risk Patients by not Providing Procedures or by Out-of-State Referrals
  • Impact of Public Reporting on Surgeons
  • Ability to Predict Performance Over Time (for Use in Choosing Providers)
  • Impact of Public Reporting on Market Share
  • Summary
  • The Future
  • Importance of Completeness and Accuracy of Data
  • Improving Acceptance and Use of Public Reports
  • Impact of Identifying Outliers
  • References
  • 36: Public Reporting of Pediatric Cardiac Data
  • The Beginning of Public Reporting
  • Lessons from Early Experiences with Public Reporting of Cardiac Surgery Data
  • The Society of Thoracic Surgeons (STS) National Database
  • STS National Database Partners with United States Healthcare for National Quality Measurement
  • Quality Measurement and Public Reporting in Pediatric and Congenital Heart Surgery
  • Future Directions for Public Reporting of Pediatric Cardiac Data
  • References
  • 37: 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)
  • Introduction
  • Limited Publicly Reported Data
  • Current Sources of Information for Parents
  • Physicians
  • "Why Didn't the Doctor Tell Me About the Surgeries?"
  • Internet Resources
  • Other Parents
  • Insurance Providers
  • Magazine Rankings
  • Publicly Reported Data: Obstacles and Benefits
  • Availability and Verification of Data
  • Mortality Data
  • Access to Care: Parental Considerations
  • Quality Improvement
  • The Future: Improved Communication for Better Outcomes
  • Conclusion
  • References
  • Index
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