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Adult CHD: Transition Awareness

Learning Objectives

By the end of this rotation, you should be able to:

  1. Understand why ACHD patients need lifelong follow-up
  2. Recognize the importance of transition from pediatric to adult care
  3. Know the basics of continued care needs for common CHD lesions
  4. Identify resources for transitioning patients

Why This Matters

  • >90% of children with CHD now survive to adulthood
  • Most are NOT cured - they have ongoing needs
  • Gaps in care during transition lead to worse outcomes
  • Your role: Help patients understand the importance of continued follow-up

Key Messages for Patients and Families

CHD Is a Lifelong Condition

Even "repaired" CHD patients need: - Regular cardiology follow-up - Surveillance for late complications - Consideration before pregnancy - Potentially ongoing medications - Sometimes repeat interventions

Transition Is Critical

The problem: Many young adults "fall through the cracks" and don't see cardiology for years.

The goal: Seamless transition to adult CHD care before leaving pediatric cardiology.

Common Late Complications by Lesion

Original Lesion What to Watch For
Tetralogy of Fallot Pulmonary valve problems, arrhythmias
D-TGA (arterial switch) Coronary issues, neo-aortic valve problems
Fontan Arrhythmias, liver disease, thrombosis
Coarctation Hypertension, re-coarctation, aortic aneurysm
Aortic valve disease Progressive stenosis/regurgitation, aortopathy
ASD/VSD repair Generally good, but arrhythmia risk

Transition Checklist (What Should Happen)

Before a patient leaves pediatric care, they should have:

  • [ ] Complete medical summary of their CHD history
  • [ ] Understanding of their diagnosis (in their own words)
  • [ ] Knowledge of their medications and why they take them
  • [ ] Understanding of symptoms that require attention
  • [ ] Adult CHD cardiologist identified
  • [ ] Appointment scheduled with adult provider
  • [ ] Discussion of pregnancy/contraception (if applicable)
  • [ ] Discussion of career/insurance considerations

What Residents Can Do

During the Rotation

  1. Ask adolescents: "Can you explain your heart condition in your own words?"
  2. Review their understanding of medications and follow-up needs
  3. Reinforce the message: This is lifelong - don't skip cardiology appointments
  4. Identify knowledge gaps and help fill them

Key Questions for Adolescents

  • "Do you know why you see a cardiologist?"
  • "What medications do you take and why?"
  • "Do you know what symptoms should concern you?"
  • "Do you have an adult cardiologist yet?"

Resources

  • ACHD Alliance: Resources for patients and families
  • Adult CHD clinics: Most children's hospitals have associated adult programs
  • Transition programs: Many pediatric cardiology programs have formal transition protocols

Key Teaching Points for Residents

  1. CHD is not cured - patients need lifelong follow-up
  2. Transition gaps are dangerous - help reinforce the message
  3. Patients should know their diagnosis - in their own words
  4. Adult CHD is a subspecialty - these patients need specialized adult care
  5. Your role: Reinforce the importance of continued care

Key Guidelines

2018 AHA/ACC Guideline for the Management of Adults With Congenital Heart Disease Circulation. 2019;139(14):e698-e800 PMID: 30586767

Board Pearls

Pearl: >90% of CHD patients now survive to adulthood - but they're not cured

Repaired CHD requires lifelong cardiology surveillance for late complications (arrhythmias, valve problems, heart failure).

Pearl: Transition gaps kill - young adults who lose cardiology follow-up have worse outcomes

Reinforce to every adolescent: keep your cardiology appointments, even when you feel fine.

Pearl: Tetralogy of Fallot adults = watch for pulmonary valve problems and arrhythmias

Most will eventually need pulmonary valve replacement. Atrial arrhythmias are common and poorly tolerated.

Self-Assessment

Question 1

What percentage of children with CHD now survive to adulthood?

Answer **>90%** With advances in surgical and medical care, the vast majority of CHD patients now survive to adulthood. However, they are NOT cured - most require lifelong cardiology surveillance.

Question 2

A 17-year-old with repaired Tetralogy of Fallot is transitioning to adult care. What late complications should they be monitored for?

Answer **Pulmonary valve problems and arrhythmias** - Progressive pulmonary regurgitation → RV dilation → may need PVR - Atrial arrhythmias (common, poorly tolerated) - Risk of sudden death (ventricular arrhythmias) - QRS duration >180 ms is a risk marker

Question 3

Before a CHD patient leaves pediatric cardiology, what should be ensured?

Answer **Key transition elements:** 1. Complete medical summary of their CHD history 2. Patient can explain their diagnosis in their own words 3. Understanding of medications and why they take them 4. Adult CHD cardiologist identified and appointment scheduled 5. Discussion of pregnancy/contraception (if applicable) Transition gaps lead to worse outcomes - many young adults "fall through the cracks" and don't see cardiology for years.