Long-term monitoring is crucial for patients with conditions affecting the aorta or aortic valve — whether they undergo surgery or never require intervention.
That need prompted the specialists at the Penn Aorta Center to expand their efforts to ensure that every patient receives consistent and beneficial follow-up care — an unprecedented step. Additionally, the team is leveraging its extensive data from aortic surveillance to improve care not only for Penn patients but for the broader medical community.
“We've 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're 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 their initial consultation, they benefit from a comprehensive multidisciplinary team that includes leading cardio-aortic and vascular surgeons and specialists in medical cardiology, imaging, genetics, and advanced practice providers.
The team takes a deep dive into each patient's risk factors. In addition to measuring the aorta, the aortic valve, or both, providers ask such questions 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?
These 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 are directed to watchful waiting, a combination of medication, monitoring, and lifestyle modification.
Whatever their diagnosis, 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 follows nearly 2,000 patients a year in its Center for Bicuspid Aortic Valve Disease and Thoracic Aortic Surveillance Program, one of the longest-running programs of its kind. This puts Penn's aortic monitoring efforts among the nation's largest in volume and helped create a model other programs follow.
Given the diversity of diseases 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 leakage.
- Dissection: Even after repairs of Type A dissections, patients 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 yearly, while others do so annually or every few years.
Providing detailed and precise aortic evaluation
Penn surveillance efforts are run by experienced advanced practice providers who partner closely with the Center's aortic surgeons. While the surgeons are available for consultation on any concern, 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 their feelings, 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 advanced practice providers review the results and discuss them with patients, clarifying how they were obtained, and if necessary, 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 in close coordination with patients and referring physicians nationwide for ongoing surveillance to prevent duplicate testing—a concern when radiation is involved. After each visit, referring physicians receive letters that include the latest images, measurements, and notes from the appointment. They can also contact 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