A Matter of Time

Aortic stenosis (AS) is the most common type of valve disease worldwide. The more severe a person’s valve disease and symptoms of valve disease are, the more likely the person will die of valve disease. As many as 1.5 million people in the United States have AS — one-third of whom have severe aortic stenosis (SAS).

Of the 500,000 people who have SAS, half who have SAS, half do not have symptoms. Once AS becomes severe (SAS), the race against the clock begins. The condition requires urgent treatment because up to half of patients with SAS die within one year of developing symptoms, according to research published in the Journal of the American Medical Association ( JAMA) in 2019.

Previous data suggests that nearly all SAS patients die within five years of developing symptoms, according to Mark Russo, M.D., chief of the division of cardiac surgery, director of structural heart disease and associate professor of surgery at Rutgers Robert Wood Johnson Medical School in New Brunswick, New Jersey.

“The biggest challenge in managing SAS patients is ensuring they receive timely treatment,” says Dr. Russo. “It is estimated that 30 to 50% of patients who have SAS do not undergo treatment.”

The chance of developing SAS increases as people grow older. By the time they reach the age of 80, they face a greater risk of developing the disease. Approximately 2% of people older than 65 years of age, 3% of those 75 and older and 4% of individuals older than 85 have AS — and Dr. Russo says these numbers are becoming higher in North America and Europe. The growing number of people developing SAS as they age, combined with a growing number of elderly people, means it’s even more important to gain a better handle on the condition.

When SAS becomes “very severe aortic stenosis,” patient outcomes are even worse whether the patient has symptoms or not. Managing the most severe cases of AS patients often proves even more challenging because how well a person is doing when seen by their doctor and features on echocardiogram are often unclear.

SAS Intervention Plagued by Clinician and Patient Reticence, Controversy SAS occurs when the aortic valve cannot move blood through the valve forcefully enough without it leaking backwards. Currently, medications can’t reverse or prevent the disease progression.

The normal treatment for SAS has been surgery to replace the valve (SAVR). This open-heart procedure has been seen as the gold standard for decades. But in the last 15 years, a new procedure has emerged for some SAS patients that doesn’t require open-heart surgery: transcatheter aortic valve replacement (TAVR). Overall, Dr. Russo describes aortic valve replacement (AVR) procedures as being “safe and highly effective.”

However, SAS is not as simple as selecting the correct valve replacement procedure. Part of the question is whether to do a valve replacement on patients who have SAS with no symptoms, and this topic is highly controversial in the medical community.

“Patients and physicians sometimes are hesitant to proceed with a valve replacement procedure until symptoms become quite severe, at which time the left ventricle and kidneys may be failing,” explains Brian Whisenant, M.D., medical director of heart valve and structural heart disease at Intermountain Healthcare in Salt Lake City.“This significantly increases the risks associated with valve replacement procedures.”

According to Dr. Russo, waiting until symptoms manifest in SAS endangers patients by putting them at risk for sudden cardiac death and increasing the potential that they may have suffered irreversible heart damage while waiting for symptoms to appear. He advocates starting prompt treatment in patients with symptoms and using echocardiography to provide images of the valve to help show how severe the valve disease is.

The complexities do not end there. In addition to being undertreated, Dr. Whisenant says SAS is also moderately underdiagnosed or misdiagnosed.

“Echocardiograms may be misinterpreted as moderate SAS when aortic stenosis is, in fact, severe,” he notes.

Patient Education Key to Better Outcomes

The burden is on the healthcare team to teach patients to recognize when they have symptoms of AS. Doing so also requires encouraging patients to seek medical attention as soon as their symptoms appear.

J. Bradley Oldemeyer, M.D., an interventional cardiologist at the University of Colorado Health in Fort Collins, says he cannot overstate the importance of physicians not ignoring when symptoms of AS progress in their patients. He advocates encouraging patients exercise regularly so they can evaluate how they feel during physical activity, one of the easiest ways to spot a problem. Increased self-aware- ness through physical movement offers great benefits.

“The symptoms of aortic stenosis can be subtle in patients who do not exercise regularly or exert themselves,” he explains. “When routine exercise, such as walking briskly for 30 minutes daily, is done regularly, patients will know promptly if there has been a change in their usual exercise tolerance.”

Perhaps no point is more important than having an awareness of the symptoms of SAS. But becoming aware of symptoms is challenging because SAS often develops gradually with subtle symptoms. Also, some symptoms, like fatigue, are often dis- missed as signs of aging or symptoms like swelling in the lower part of the body and shortness of breath can be mistaken for heart failure. While patients and physicians alike should suspect SAS when a patient has labored breathing or difficulty taking a deep breath, Dr. Whisenaut notes that this can sometimes be mistaken for lung dis- ease. Dr. Oldemeyer says patients should contact their physicians to discuss their SAS when they can no longer perform their usual daily activities.

Finally, clinicians should recognize that educating SAS patients is not a one- time task. Dr. Oldemeyer says physicians should use the routine patient visits that typically occur every three to six months as an opportunity to ensure that patients’ symptoms have not changed. However, physicians should also use the consultation as an opportunity to remind patients of the symptoms of valvular heart disease.

Dr. Whisenant also says patients might learn more from talking to a cardiologist who specializes in valvular heart disease. When appropriate, patients might want to ask their other healthcare provider(s) for a referral to a specialist if they are not already seeing one.

The referral should be for the purpose of discussing the patient’s aortic stenosis and not aortic valve replacement.

Patient Education Vital to Improving Survival

Severe symptomatic aortic stenosis carries a high mortality rate, with as many as 50% of patients dying within one year after the onset of symptoms. This makes timely diagnosis and treatment imperative in improving patient outcomes and in saving patients’ lives.

“Healthcare providers should advise patients to monitor themselves for heart failure-like symptoms (inability to eat a full meal, swelling, shortness of breath while lying down and with activity), angina (chest pain) or fainting,” explains Patricia Keegan, DNP, NP-C, AACC. “If they find themselves with these symptoms or especially progression, they should seek [immediate] care.”

In addition to those symptoms, Keegan says other indications on which clinicians should counsel their patients include:

  • Angina
  • Rapid, fluttering heartbeat
  • Labored breathing
  • Shortness of breath
  • Exercise intolerance

Swelling in the lower extremities Perhaps these issues are best addressed by the heart valve team — a group of cardiovascular medical professionals. The team includes interventional cardiologists, cardiothoracic surgeons, advance practice providers, valve clinic coordinators, imaging and anesthesiologists, in addition to other clinicians.

The patient benefits greatly from having the multidisciplinary heart team as an engaged resource.

“The heart team is there to help navigate the options for treatment of SAS,” says Keegan, who is the director of strategic and programmatic initiatives and the lead nurse practitioner at Emory Heart & Vascular in Atlanta. “They are there to provide evidence-based care as well as pathways for treatment.”

The heart team is one form of evidence-based care per the 2017 American College of Cardiology Expert Consensus Decision Pathway for Transcatheter Aortic Valve Replacement. At Keegan’s clinic, the group engages in shared decision-making in which they have thorough discussions with the patients regarding the risks and benefits of all treatments while respect- ing the patient’s decision-making process.

Looking Ahead

Experts have different options about when patients with SAS should have valve replacement, but Dr. Russo notes that mounting evidence suggests patients benefit from having a valve replacement procedure before symptoms start.

Despite the lack of consensus regard- ing the treatment timeline, experts agree on one key point: the importance of educating patients on their disease state to facilitate more prompt diagnoses and treatment.

Perhaps Dr. Oldemeyer summarized it best: “SAS, if under-recognized and untreated, has a worse prognosis than many cancers. Routine screening and educating of patients cannot be overemphasized.”