Guide for Advanced Nursing Care of the Adult with Congenital Heart Disease

Foreword
Contents
Part I: Epidemiology, Anatomy and Pathophysiology
1: Incidence of Congenital Heart Disease and Relevance in Adulthood
1.1 Epidemiology of Congenital Heart Disease
References
2: Cardiac Defects
2.1 Atrial Septal Defect
2.1.1 Clinical Presentation
2.1.2 Management
2.1.3 Complications
2.2 Ventricular Septal Defect
2.2.1 Clinical Presentation
2.2.2 Management
2.3 Atrioventricular Septal Defects
2.3.1 Clinical Presentation
2.3.2 Management
2.4 Left Ventricle Outflow Tract Obstructions
2.4.1 Clinical Presentation
2.4.2 Management
2.5 Coarctation of the Aorta
2.5.1 Clinical Presentation
2.5.2 Management
2.5.3 Complications
2.6 Patent Ductus Arteriosus
2.7 Clinical Presentation
2.7.1 Management
2.7.2 Complications
2.8 Transposition of the Great Arteries (D-TGA)
2.8.1 Clinical Presentations
2.8.2 Management
2.8.3 Complications
2.9 Tetralogy of Fallot and Right Ventricular Outflow Tract Disorders
2.9.1 Clinical Presentation
2.9.2 Management
2.9.2.1 Palliative Surgery
2.9.2.2 Corrective Surgery
2.9.3 Complications
2.10 Residual Right Ventricular Outflow Tract Obstruction
2.11 Endocarditis
2.11.1 Sudden Cardiac Death
2.12 Pulmonary Atresia
2.12.1 Clinical Presentation
2.12.2 Management
2.12.3 Complications
2.13 Single Ventricle and Fontan Circulation
2.13.1 Clinical Presentation
2.13.2 Surgical Procedure
2.13.3 Complications
References
Part II: Transition from Pediatric to Adult Care
3: Transitional Care for Young People
3.1 Background
3.2 What Is Transition?
3.3 Process and Stage of Transition
3.4 Patient Education and Empowerment
3.5 Pregnancy, Contraception and Family Planning
3.6 Exercise and Participation in Sports
3.7 Preventing the Loss to Follow-up
3.8 Transition Information Day
3.9 Charities Involvement
3.10 Psychological Aspect of Transition and Challenges
3.11 Established Relationships with Paediatric Teams/Involving Parents and Carers
3.12 Role of Family/Carers in the Transition
3.13 Role of the ACHD CNS in Supporting Young Adults with CHD
3.14 Executive Summary
References
4: Advancing High-Value Transitional Care: The Central Role of Nursing and Its Leadership
4.1 Introduction
4.2 Focus on Holistic Care in Nursing
4.3 Holistic Needs of Transitional Care
4.4 Nursing Leadership in Transitional Care
4.5 Conclusions
References
5: Building a Transition Program
5.1 Factors That Impact the Structure of a Transitional Program
5.2 Models of Transitional Programs
5.2.1 Methods of Transitional Education Delivery
5.2.2 Timing of Transitional Care and Transfer of Care
5.3 Structure of a Transition Clinic
5.4 Domains of Assessment
5.4.1 Transition Readiness
5.4.1.1 Mental Health
5.4.1.2 Health Literacy
5.4.1.3 Educational Preferences
5.4.1.4 Family and Social Support
5.4.1.5 Health-Related Beliefs
5.4.2 Health Knowledge
5.4.3 Self-Care Assessment
5.4.4 Care Preferences
5.4.5 Future-Oriented Assessment
5.4.6 Diagnosis and Planning
5.4.7 Intervention Planning
5.4.8 Transitional APRN Interventions
5.4.9 Implementation
5.4.10 Evaluation
5.4.11 Future Nursing Research Opportunities
5.5 Conclusion
References
Part III: The Role of the Advance Nurse Practitioner in the Care of ACHD Patients in Different Care Setting
6: Nursing Care in the Outpatient and Hospital Setting
6.1 Specialist Role
6.2 Outpatient Setting
6.3 Specific Lesions
6.3.1 Valve and Outflow Tract Lesions
6.3.1.1 Left Heart
6.3.1.2 Right Heart
6.3.2 Septal Defects
6.3.3 Eisenmenger Syndrome
6.3.4 Aortic Lesions
6.3.5 Transposition Complexes
6.3.6 Tetralogy of Fallot/Pulmonary Atresia with VSD and MAPCA
6.3.7 Univentricular Circulation/Fontan
6.4 Inpatient Setting
6.4.1 Pre-assessment
6.4.2 Admission
6.4.3 Assessment
6.4.4 Oxygen
6.4.5 Medical Admission
6.4.6 Surgical Intervention
6.4.7 Catheter Intervention
6.4.8 Psychological Support
6.4.9 Discharge
References
7: Nursing Care in the Cath Lab
7.1 Cath Lab
7.1.1 Indication to Heart Catheterization
7.2 Role of a Cath Lab Nurse
7.3 Operative Room Characteristics
7.4 Room Preparation
7.5 Procedure’s Management
7.5.1 Patient Preparation
7.5.2 Sterile Trolley Preparation (Fig. 7.3)
7.5.3 Cath Lab Tools
7.5.4 Interventional Procedures
7.5.5 Nurses During the Procedure
7.5.6 Post-procedural Monitoring
7.6 Tools Management
References
8: Nursing Care in the Critical Setting
8.1 Pediatric vs. Adult ICU
8.2 Hemodynamic Monitoring
8.2.1 Non-invasive Monitoring
8.2.2 Invasive Monitoring
8.2.2.1 Types of Invasive Monitors
8.3 Fluid Resuscitation
8.3.1 Special Considerations
8.4 Ventilation and Sedation
8.5 Arrhythmia Management
8.6 Anticoagulation
8.6.1 Endocarditis
8.6.2 Pain Management
8.6.3 Cardiac Rehabilitation
8.6.4 Nutrition
References
Part IV: Advanced Heart Failure in ACHD
9: Management of Acute Heart Failure
9.1 Introduction
9.2 Epidemiology of Heart Failure in CHD
9.3 Pathophysiology
9.3.1 General Concepts and Circulatory Models
9.3.2 Phenotypes of HF in CHD
9.3.3 Main Differences of HF in Acquired Vs Congenital Disease
9.4 Management
9.4.1 General Principles
9.4.2 Practical Management Multistep Algorithm of Acute HF in CHD
9.5 Key Learning Points
References
10: Mechanical Circulatory Support Strategies
10.1 Introduction and Definition
10.2 Indications and Classification
10.3 MCS Modalities
10.3.1 ECMO
10.3.2 VAD
10.3.3 TAH
10.3.4 Impella and Tandem Heart
10.4 MCS Reports and Outcomes in ACHD Patients with Biventricular Physiology
10.5 MCS in IN ACHD Patients with Single-Ventricle Physiology
References
11: Heart Transplantation: The Challenging Journey of an ACHD
11.1 Congenital Heart Disease and Heart Failure
11.2 Cardiac Surgery for End-Stage Heart Failure in ACHD
11.3 Heart Transplant and Listing
11.4 Transplant Eligibility and Listing
11.4.1 When Is a Heart Transplant Performed?
11.4.2 Crossmatch
11.5 Heart Transplant Surgery: Nursing Management
11.5.1 Preoperative Phase
11.5.2 Heart Transplant
11.6 Postoperative Phase in the Intensive Care Unit
11.6.1 Vasoactive Medications
11.6.2 Nitric Oxide
11.6.3 Extracorporeal Membrane Oxygenation
11.7 Postoperative Phase in Transplant Unit Ward
11.8 Complications during Hospital Stay
11.9 Clinical and Home Rehabilitation
11.9.1 Posttransplantation Management
11.9.2 Follow-Up
References
Part V: Adult Congenital Heart Disease and Pregnancy
12: Congenital Heart Disease During Pregnancy
12.1 Introduction
12.2 Hemodynamic Changes During Pregnancy and Delivery
12.3 Assessment of Maternal and Fetal Risk and Prediction of Outcome
12.3.1 Pulmonary Hypertension
12.3.2 Fontan Circulation (Total Cavopulmonary Connection)
12.3.3 Hereditary Aortopathies
12.3.4 Congenital Heart Diseases with Systemic Right Ventricle
12.3.5 Cyanotic Congenital Heart Diseases
12.4 The “Pregnancy Heart Team”
12.5 Medications
12.6 Cardiovascular Complications Pregnancy-Related
12.7 Delivery Planning
12.8 Follow-Up after Delivery (Postpartum and Long-Term Follow-Up)
References
13: Contraception, Family Planning, and Pregnancy Management: The Nurse Specialist Role
13.1 Family Planning and Contraception Counseling
13.1.1 Contraception Counseling
13.1.2 Barriers to Contraceptive Use
13.1.3 Contraceptive Options
13.2 Tier 1: Most Effective (1% or Less Chance of Failure with Typical Use)
13.2.1 Intrauterine Devices (IUDs)
13.2.2 Progestin Subdermal Implant
13.2.3 Female and Male Sterilization
13.3 Tier 2: Less Effective (6–12% Chance of Failure per Year with Typical Use)
13.3.1 Progestin-Only Injectables
13.3.2 Progestin-Only Pills
13.3.3 Combined Hormonal Contraceptives
13.3.4 Emergency Contraception
13.4 Tier 3: Least Effective (18–28% Failure Rate per Year with Typical Use)
13.4.1 Barrier Methods, Spermicide, Diaphragm, Sponge, Fertility Awareness, and Withdrawal
13.5 Prepregnancy Counseling
13.5.1 Fetal Risk
13.6 Genetic Counseling
13.7 The Clinical Assessment
13.7.1 Medical and Cardiac History
13.7.2 Physical Assessment
13.7.3 Normal Signs and Symptoms in Pregnancy
13.8 Diagnostic Testing
13.9 Pregnancy Management: The Nurse Specialist Role
13.9.1 Antepartum Care
13.9.2 Delivery Plan
References
Part VI: Physical Activity and Sport
14: Rehabilitation’s Point Break: Changing for Improving
14.1 Introduction
14.2 Phases 1 and 2
14.3 Exercise Prescription
14.4 Phases 3 and 4
References
15: Promotion of Daily Physical Activity and Exercise for Adults with Congenital Heart Disease
15.1 Background
15.2 Physical Aspect
15.3 Social Aspect
15.4 Psychological Aspect/Quality of Life (QoL)
15.5 Musculoskeletal Benefit
15.6 Respiratory Function Benefit
15.7 The Fontan Circulation
15.8 Impact of COVID-19
15.9 Impact of Technology
15.10 Nursing Assessment
15.11 Role of the ACHD CNSs
15.12 Executive Summary
References
Part VII: Patient Self-Care and Nursing Role for Patients’ Education
16: Connecting Dots for Framing Health: The Self-Care Process
16.1 Introduction
16.2 What Is Self-Care?
16.3 Why Self-Care Is Important?
16.4 What Is Known About Self-Care in Adults with Congenital Heart Defects?
16.5 Conclusion
References
17: Patient Education to Self-Management
17.1 Patient Education to Self-Management: Education to Pharmacological Therapy
17.2 Patient Education to Self-Management: Education to Lifestyle Habits
17.2.1 Heart-Healthy Nutrition
17.2.2 Physical Activity
17.2.3 Smoking and Tobacco Use
17.2.4 Substance Use, Including Alcohol, Cannabis, and Illegal Drugs
17.2.5 Body Art (Tattooing and Piercing)
17.3 Patient Education to Self-Management: Infective Endocarditis
17.3.1 Major Criteria
17.3.2 Minor Criteria
17.3.3 Definite Infective Endocarditis
References
18: The Health Engagement of Adult Congenital Heart Disease Patients
18.1 Introduction
18.2 What Is Health Engagement?
18.3 Health Engagement of Adults with Congenital Heart Disease
References
19: The Essential Impact of Counseling in Improvement of Quality of Life in ACHD Patients
19.1 Introduction
19.2 Health-Related Quality of Life
19.3 CHD Complexity and Functional Status
19.4 Psychological Distress
19.5 Social Challenges
19.6 Sense of Coherence
19.7 Counseling in ACHD
19.8 Counseling in Transitional Age
References
Part VIII: End-of-Life Care: Nursing Care in the Final Stage of Life
20: Advance Care Planning and Advance Directives
20.1 Part 1: Developing a Comprehensive Advance Care Planning Program
20.1.1 Introduction
20.1.2 When to Have these Conversations with Patients
20.1.3 What Is the APP/RN Role
20.1.4 Model of Delivery of Discussions in Outpatient Clinic
20.1.5 The Serious Illness Conversation Guide
20.1.6 Patient Selection
20.1.7 Having the Conversations
20.1.8 Post Conversation Nursing Assessment and Follow-Up
20.1.9 Tracking
20.1.10 Referral to Palliative Care and Hospice
20.2 Part 2: Advance Directives
20.2.1 What Is an Advance Directive
20.2.2 Who Should Complete an Advance Directive
20.2.3 Why Complete an Advance Directive? Why Is It Important?
20.2.4 When to Complete an Advance Directive
20.2.5 How Is an Advance Directive Completed/Initiated by the ACHD Provider
20.2.6 Nursing Assessment
20.2.7 Future Nursing Research Opportunities
20.3 Conclusion
References
Part IX: Coronavirus Disease 2019 (COVID‐19) Pandemic Implications in ACHD
21: COVID-19 and Adult Congenital Heart Disease
21.1 Introduction
21.2 Basic Characteristics of SARS-COV-2 Infection and Its Management
21.3 Potential Impact of SARS-COV-2 on the Heart
21.4 Resilience and Response of Adult Patients with Congenital Heart Disease During the COVID-19 Pandemic
21.5 Nursing Role During the COVID-19 Pandemic
21.6 Conclusion
References