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Clinicians often have questions about referring patients to Cleveland Clinic for adult congenital heart disease. Dr. Margaret Fuchs answers the following questions:

  • Are there guidelines and recommendations for treatment of ACHD
  • What are the goals of monitoring and treatment
  • What are the key considerations when referring to an ACHD program
  • What types of diagnostic testing do you rely on
  • What should be the components of a multidisciplinary ACHD program
  • When should physicians refer to an ACHD program and how do you interact with referring physicians?

Learn more about the Adult Congenital Heart Disease Center

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Adult Congenital Heart Disease – Partnership in Care

Podcast Transcript

Welcome to Cleveland Clinic Cardiac Consult brought to you by the Sydell and Arnold Miller Family, Heart, Vascular & Thoracic Institute at Cleveland Clinic.

Margaret Fuchs, MD:
Hi, my name is Margaret Fuchs. I'm an adult congenital cardiologist here at the Cleveland Clinic. I've been asked to answer some simple questions that medical professionals or referring providers might have about the care of patients with adult congenital heart disease and our program here at the Cleveland Clinic. So I'm happy to answer your questions, and we'll get started.

Margaret Fuchs, MD:
The first is, are there guidelines or a set of recommendations for the care of patients with adult congenital heart disease? The answer is, yes. The ACC AHA guidelines were most recently published in 2018, and it's a great document and there are guidelines specifically by the patient's particular diagnosis, in terms of what imaging they might need, different management strategies, and also, on a yearly or every-other yearly basis, what testing that patient should have based on their level of functioning. So that's a great document. It's a great reference for general providers, for cardiologists, for trainees, and is an important reference, I think, to have in your back pocket when you might encounter one of these patients in your practice.

Margaret Fuchs, MD:
The next is, what are the goals for the monitoring and treatment of patients with adult congenital heart disease? I think the goal really is to detect the sequelae, the long-term sequelae, of adult congenital heart disease early and to get on top of it and keep our patients well. We know that patients who have had palliative, or even what was considered curative, surgery in childhood do in fact have things that come up in adulthood, the onset of pulmonary hypertension, the development of valve disease that wasn't previously present, the onset of heart rhythm disturbances. All of those things come up, even in a patient who has had a repair of whatever structural heart disease they born with.

Margaret Fuchs, MD:
And so the goal really is to see our patients regularly, to know how they're doing, and to know how they're doing when they're not doing as well. So to be able to detect what's a change and how to hop on top of that as quickly as possible. We use, oftentimes, annual testing or less often, depending on how the patient's doing, to make sure that we're keeping track of their heart rhythm of their heart function and sometimes their cath results, if that's necessary as well, to look for pulmonary hypertension.

Margaret Fuchs, MD:
What are the key considerations when referring a patient to an ACHD center? I think the take home message is, if you have a patient with adult congenital heart disease, we're happy to follow them, we love to co-manage these patients with, with providers in the area or at other centers, and the most important thing is that the guidelines clearly tell us that adult congenital heart disease patients are best managed by adult congenital heart disease specialists, in cooperation with all of the patients' other providers back home. We know that this gives our patients the best outcomes and it's really guideline-directed care. And so we are delighted to see patients with simple congenital heart disease who maybe only need to be seen at our center every 5 years, a closed ASD, a closed VSD, a prior coarctation repair, something like that, or patients with much more complex cyanotic congenital heart disease, who are looking at a heart-lung transplant, for example. We really see the whole gamut and really no history is too minimal and we're delighted to be involved in all of these patients' care.

Margaret Fuchs, MD:
What are the types of diagnostic testing that I rely on? Echocardiography is a huge part of my personal practice and is a huge part of taking care of our patients with adult congenital heart disease. We also really rely on multimodality imaging, cardiac CT, cardiac MRI, heart caths, transesophageal echo. The reality is, that adult congenital heart disease have complex anatomy. In many cases, even if they're repaired and the blue blood goes where it's supposed to go and the red blood goes where it's supposed to go, sometimes the way that it gets there is very complicated and there are a lot of things that can come up, and we oftentimes need more than one test to make sure that we've got to handle on exactly how the patient’s doing. So all of those various imaging studies are really important, as well as oftentimes cath lab assessment for hemodynamics, if necessary.

Margaret Fuchs, MD:
What are the components of a multi-disciplinary ACHD program? There's a huge army of folks that is necessary to take care of our patients optimally, and at the heart of that is the adult congenital heart disease cardiologist. But we also rely really heavily on all of the other subspecialty cardiologists, the interventional colleagues, our electrophysiology colleagues, our heart failure transplant colleagues. For many of our patients who are in their prime childbearing years, wishing to have children, we work really closely with our cardio OB colleagues and Maternal Fetal Medicine program to help many patients have a successful pregnancy. We use our pulmonary hypertension specialists and work closely with them. Anesthesia colleagues, when our patients need a surgery. There really is an incredible number of people that love this patient population and are involved. We work closely with many, many specialists, and all of them really are required to have a thriving ACHD program so that the patient can come, and this can be their medical home when they're having sort of ACHD-specific medical concerns, and we have all of the tools in our arsenal to take optimal care of them.

Margaret Fuchs, MD:
And finally, when should physicians refer to an ACHD program and how do we then interact with the referring provider? Really, the sooner, the better. Again, the guidelines tell us that our patients do best when ACHD is part of their care. I co-manage many of my patients with a referring cardiologist or with their referring PCP, depending on where the patient lives and how far we are from home for them. So it's oftentimes that we co-manage patients. I often see patients once a year, once every couple years, and then we'll send a letter back or make a phone call if something in particular is going on with the patient. But the most important thing is really, if you're sitting, working with a patient and feeling a little uncertain, it's definitely the time to refer. I'm delighted to see patients who are doing well, and if the answer is they're doing great, then that's a win for everybody involved. But definitely, the sooner, the better. We're happy to be involved in the care of these patients.

Margaret Fuchs, MD:
Thanks so much. It was a pleasure speaking with you all and I hope to work with you all soon.

Thank you for listening. We hope you enjoyed the podcast. We welcome your comments and feedback. Please contact us [email protected]. Like what you heard? Subscribe wherever you get your podcasts or listen at

Cardiac Consult

Cardiac Consult

A Cleveland Clinic podcast exploring heart, vascular and thoracic topics of interest to healthcare providers: medical and surgical treatments, diagnostic testing, medical conditions, and research, technology and practice issues.

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