THRIVE: Pediatric-to-Adult Congenital Heart Disease Transition Program
At SSM Health Cardinal Glennon Children’s Hospital, we want children with congenital heart disease to thrive as they enter adulthood. To address the ongoing needs of these patients, the THRIVE Pediatric-to-Adult Congenital Heart Disease Transition Program was created at SSM Health Cardinal Glennon Children’s Hospital to help patients transition their care from pediatric to adult specialists and become empowered to take charge of their own health.
As the only comprehensive congenital heart disease (CHD) transition program in the region, THRIVE offers the following:
- Advanced testing and surgical options for children and adults
- Full coordination of care between pediatric and adult providers
- 24-hour access to ACHD consultation
- ACHD urgent care clinic
- Patient education & transition readiness services
The THRIVE Program
The THRIVE Program — Transitioning Heart warriors to be Ready, Independent, Vigilant, and Empowered — includes specialists who are board certified in both pediatric and adult congenital cardiology. The team also includes a physician assistant and nurse coordinator as well as a social worker and exercise physiologist.
Our Program Focuses on Six Specific Areas:
Transition — Adolescents and their parents will work directly with a nurse educator and their physician to learn more about how to care for their specific heart condition over the long term. Typically this starts around age 14 or 15.
Heart — As a child grows older, they learn about their heart condition and have a chance to meet with adult care providers experienced in lifelong CHD care. They learn about symptoms that may warrant a call to a physician and are made aware of how to contact their doctors.
Readiness — Teens will fill out a Transition Readiness Form to assess not only how they feel about taking charge of their own health, but also how confident they are to navigate the health system and ask questions as needed. They also are asked if they know the names of their medications, when/how much to take, and how to refill them. Teens and their caregivers also are educated about the transition to independent self-care.
Independence — When deemed ready, teens will have independent, private doctor appointments while parents are kept in the loop with regards to their care. This gives teens the opportunity to learn how to talk with doctors and nurses and feel comfortable asking questions about their own health. Around the age of 16 or 17, the adult congenital heart disease team will meet with the patient and family in the THRIVE clinic.
Vigilant — Teaching teens to be self-aware of their overall health needs is a key aspect of the program. We teach adolescents to watch for any signs or symptoms that may prompt a call to their doctor. We also teach them when and how to take or refill any prescribed medications.
Empowerment — Information about signs and symptoms to watch for, as well as discussions on sexual and reproductive health, health maintenance, and lifestyle behaviors will empower young adults to take charge of their own health as they gain independence.
Our pediatric and adult congenital heart disease specialists will coordinate with specialists at SSM Health Saint Louis University Hospital as patients transition to adult care. We work closely with:
- Adult CHD specialists
- Cardiac rehabilitation specialists
- Electrophysiologists
- Pulmonologists
- Gastroenterologists
- Genetic counselors
- Heart failure specialists
- Maternal-fetal medicine specialists
- Nutrition experts
- Psychiatrists
THRIVE Program Timeline
01
14 years old
Letter sent to patient and family introducing the ACHD program.
02
16 years old
Assessment given. Meet ACHD team member & schedule transition visit.
03
16-17 years old
Complete transition visit with ACHD advanced practice provider.
04
18 years old
Transfer care to ACHD program. Establish care with ACHD physician.
Timeline for transition from pediatric to adult congenital heart care via the THRIVE program. This is a fluid process, and each step will be individualized to each adolescent patient with input from the pediatric cardiologist and parents of each patient.
24/7 ACHD Consultations
For urgent concerns, SSM Health Cardinal Glennon Children’s Hospital offers a dedicated Adult Congenital Heart Disease (ACHD) Urgent Care Clinic and 24-hour access to ACHD consultations for all patients with ACHD and their families.
If you are a provider and need an inpatient consultation, call 314-268-2700 ext 7792 or page 314-908-0103 from 7:30 – 4:00 PM Monday – Friday. For urgent consultations outside business hours, call 314-577-5600 and ask for the cardiologist on call.
Helpful Resources for Patients & Families
I Heart Change designed their content for young people with the aim of making them feel more comfortable with the transition from pediatric to adult care for CHD.
The Adult Congenital Heart Association is a great resource to learn more about your heart defect and connect with others who also have CHD.
