A PHTS Guide: Transferring from Pediatric to Adult Heart Transplant Care
This provider-facing page is designed to support clinical teams using the transition guide during routine visits with adolescent and young adult heart transplant recipients.
The guide can be introduced gradually over time to help patients build knowledge, confidence, and independence as they prepare for adult heart transplant care.
View the guide online
A PHTS Guide: Transferring from Pediatric to Adult Heart Transplant Care is available to view online.
The guide was created to support patients, families, and care teams as adolescent and young adult heart transplant recipients prepare for the transition from pediatric to adult heart transplant care.
Printed copies are available for $12 per book, plus shipping. PHTS centers and transplant programs can use the order form below to request copies for patients and families.
View the GuideOrder Printed Copies
PHTS centers and transplant programs may order printed copies of the Transition Guide for use with patients and families. Complete the form below to submit your order.
How providers can use this guide
Use the guide as a structured conversation tool during clinic visits, transition readiness assessments, and preparation for transfer to adult care.
Introduce transition early
Begin transition conversations around ages 12 to 14. Frame transition as a gradual process focused on long-term health, independence, and preparation for adult care.
Review key skills at each visit
Use the guide to discuss medications, infection and rejection symptoms, refill management, calling the care team, scheduling appointments, and insurance basics.
Document progress
Note transition discussions in visit summaries, track readiness over time, and identify areas where additional teaching or practice may be needed.
Recommended Guide Sections by Age
Page references are included so providers can quickly direct patients and families to the most relevant sections during clinic visits.
- Page 12: Introduction to Heart Transplant
- Page 13: Transition Readiness
- Page 16: Medical Conditions
- Page 20: Risks After a Heart Transplant
- Page 33: Medications
- Page 51: Mental Health Concerns Among Teens and Young Adults
- Page 59: Nutrition Guidelines After a Heart Transplant
- Page 16: Medical Conditions
- Page 20: Risks After a Heart Transplant
- Page 33: Medications
- Page 40: Making Responsible Choices with a Heart Transplant
- Page 47: Managing Stress
- Page 59: Nutrition Guidelines After a Heart Transplant
- Page 33: Medications
- Page 40: Making Responsible Choices with a Heart Transplant
- Page 47: Managing Stress
- Page 85: Insurance, Finance, and Health Decisions
- Page 94: Completing the Transition to an Adult Heart Transplant Program
- Page 85: Insurance, Finance, and Health Decisions
- Page 91: Important Health Decisions
- Page 94: Completing the Transition to an Adult Heart Transplant Program
Quick Section Reference
Use this table to quickly find the major sections of the guide during clinic visits or transition planning discussions.
| Guide Section | Starts on Page |
|---|---|
| Provider Guide: Using the Heart Transplant Transition Materials | 10 |
| Introduction to Heart Transplant | 12 |
| Transition Readiness | 13 |
| Medical Conditions | 16 |
| Risks After a Heart Transplant | 20 |
| Medications | 33 |
| Making Responsible Choices with a Heart Transplant | 40 |
| Managing Stress | 47 |
| Nutrition Guidelines After a Heart Transplant | 59 |
| Insurance, Finance, and Health Decisions | 85 |
| Important Health Decisions | 91 |
| Completing the Transition to an Adult Heart Transplant Program | 94 |
Endorsed by the Pediatric Heart Transplant Alliance
This guide is endorsed by the Pediatric Heart Transplant Alliance in support of patients, families, and providers navigating the transition from pediatric to adult heart transplant care.
Provider reminders
Introduce transition early, review key skills at each visit, assess readiness using transition tools, and reinforce gradual independence over time.
Prepare patients and families for adult care by reviewing expectations, supporting communication skills, and documenting progress at each visit.
Consistent messaging matters
Bring the transition booklet into routine visits and continue reinforcing the same core themes: independence, safety, responsibility, communication, and long-term transplant health.