For patients with conditions affecting the aorta or aortic valve, long-term monitoring is crucial — whether they undergo surgery or never require intervention.
That need has prompted the Penn Aorta Center to expand its leading efforts at follow-up care to ensure they get applied to every patient — an unprecedented step. The team is also using its extensive collection of data from aortic surveillance to improve care, both for Penn patients and the field at large.
"We have spent a lot of time putting the infrastructure in place to be able to keep track of patients," says director Nimesh Desai, MD, pointing to a recent expansion in the scope of the Aorta Center's approach and resources. "We are going beyond a disease-focused model to a patient-focused model and trying to understand how to look after people for their lifetimes."
Setting Patients Up With Ongoing, Personalized Aortic Management
When patients come to the Penn Aorta Center for initial consultation, they have access to a full multispecialty team, featuring not only top cardio-aortic surgeons and vascular surgeons but also experts in medical cardiology, imaging, genetics and nursing.
The team takes a deep dive into each patient's risk factors. In addition to measuring the aorta, the aortic valve or both, providers take blood pressure. They also ask questions such as:
- Does the patient or a first-degree relative have a history of aortic dissection, aortic or cerebral aneurysm, bicuspid aortic valve, or connective tissue disorder?
- Does a known genetic variant tied to aortic disease run in the family?
- Does the patient have a history of smoking, inflammatory conditions or congenital heart disease?
Those attributes, combined with national guidelines and years of experience, guide the team in recommending which path patients should take. Some promptly receive surgical intervention — Penn is known for sophisticated repairs and minimally invasive approaches — while others can wait, even if they need to take medications or modify their lifestyle.
Either way, patients need follow-up evaluations at personalized intervals and with appropriate multi-modality imaging.
Building on a Long History of Aortic Monitoring
The Penn Aorta Center already follows nearly 2,000 patients a year — almost 1,000 patients in its Center for Bicuspid Aortic Valve Disease and up to 800 in its Thoracic Aortic Surveillance Program, one of the longest-running programs of its kind. That volume puts Penn's aortic monitoring efforts among the nation's largest, and it helped create the model other programs follow.
Given the diversity of disease involved, Penn advises that patients need aortic surveillance for a wide range of concerns, including:
- Aortic enlargement: Patients with aortic aneurysms (or even significant dilation) need checkups of aortic stability and growth to avoid rupture or dissection. Even if they undergo surgical repair, they remain at risk for aneurysms elsewhere in the aorta.
- Aortic regurgitation: Whether from a bicuspid valve or an enlarged aorta, less severe regurgitation may just need monitoring, as long as it's not harming the heart. The challenge is to watch for that turning point. Repaired valves also need follow-up care to assess any remaining leaking.
- Dissection: Even after repairs of Type A dissections, patients still face the prospect of residual, downstream tears and may eventually require further intervention.
"These are things that impact patients over their entire lifetimes and really require care from a comprehensive, multidisciplinary team," Dr. Desai says. "The aorta is a living organ that adapts to its environment and it can unexpectedly change over time. Then we work together to figure out the next move."
Some patients need these evaluations several times a year, while others do so annually or every few years.
Providing Detailed and Precise Aortic Evaluation
Penn surveillance efforts are run by experienced nurse practitioners who partner closely with the center's aortic surgeons. While the surgeons are available for consultation on any concerns, the ability to work independently of their busy schedule gives patients more options when booking appointments.
Each visit lasts several hours — enough time for an efficient but nuanced, comprehensive evaluation. Patients discuss how they've been feeling, get answers to their questions and receive advice about medications, blood pressure and lifestyle, including safe activity levels. They also undergo imaging, typically either CT or MRI, with the ability for the team to see subtle changes in the heart or the aorta's wall since the last scan.
In a field where every fraction of a centimeter matters, Penn ensures accurate and consistent measurements by taking basic but sometimes overlooked steps — following the same scan protocols and starting in the same spot each time. The nurse practitioners view the results and share them with patients, explaining how they were derived. If warranted, the nurse practitioners can arrange a surgical consultation.
"It provides them reassurance that they're being followed closely," says Melanie Freas, DNP, CRNP, clinical program manager of the Center for Bicuspid Aortic Valve Diseases. "They have a surgeon who's ready to make that call pretty quickly and can mobilize when appropriate."
Supporting Patients and Referring Physicians in Aortic Surveillance
The Penn Aorta Center works with patients and referring physicians around the country for ongoing surveillance. Close coordination ensures patients don't have to undergo duplicate testing. Referring physicians receive letters after each visit, featuring the latest images and measurements and any notes from the appointment. They can reach out to the Penn team at any time.
"We want to make sure our referrings are still the primary medical doctors for patients," Freas says.
While some patients choose to have some of their follow-up care at Penn — the team can provide assistance from afar to local cardiologists — others travel back for all their checkups.
"I think they know they're in a place that understands what's going on, has done a lot of research and is there for them," Freas says. "They look forward to going over their test results. We may say, 'Everything is okay, it hasn't changed.' Or, 'Things have changed, but you're okay, because we can help you get through this.' It comes down to trust in our expertise and that we have the providers to take care of them."
Additional Resources from the Penn Aorta Center