People With Tricuspid Valve Disease Want More Information, Sooner

People with tricuspid regurgitation (TR) are heavily reliant on care from their adult children and generally would like more and earlier education about their condition—these are the messages that emerged from a patient forum capturing the growing field of tricuspid valve interventions.

With the US Centers for Medicare & Medicaid Services recently announcing coverage for both tricuspid transcatheter edge-to-edge repair and transcatheter tricuspid valve replacement, patients with symptomatic TR now have a slew of treatment choices in an area where there was once only medication.

“We have more options than ever before for the treatment of tricuspid regurgitation, and I think for a lot of clinicians, it felt like it came upon us very quickly, and we did not necessarily have a lot of information about what was most important to patients when making decisions about how to treat tricuspid regurgitation,” lead author Megan Coylewright, MD (Essentia Health, Duluth, MN), told TCTMD.

Her team held a 2-day forum in partnership with the American College of Cardiology’s CardioSmart group in Chattanooga, TN, in November 2023, to learn more about how patients are navigating the diagnosis and treatment of TR. The main feedback from 10 patients (mean age 77 years; 60% women) and nine care partners, published online last week in JACC: Advances, was that knowledge about their condition was low, their independence was severely affected, and they would like education and referral to specialist care sooner.

The desire for more engagement with the healthcare team is consistent with what’s seen with other medical conditions, Coylewright said. “This came through loud and clear across demographics. Some of our patients had very little formal education and others had college degrees, and all of them said the same thing.”

Forum participants—half of whom had a past history of tricuspid intervention and half were treated medically—noted how the disease tends to progress and takes away their autonomy.

“One of the unique aspects for this medical condition that we have not seen to the same degree in some of the other valvular heart disease is the chronicity of tricuspid regurgitation and how it really limits people’s independence,” she said. While this typically doesn’t happen in an urgent fashion, they often become housebound in dealing with the side effects of taking diuretics, and this in turn affects their care partners.

“A lot of these patients with severe TR are relying heavily on their adult children and it’s having a big economic and emotional impact for those adult children that are in this ‘sandwich generation,’” Coylewright said, referring to the fact that many of these care partners are simultaneously trying to raise children while also caring for their parents.

The findings bolster the argument that improvement in quality of life following tricuspid intervention is a worthy goal, in and of itself, if it means that patients and their families get relief, she said. Notably, recent data from the Tri-QOL registry show that quality-of-life gains tend to accompany reductions in TR.

There was heterogeneity in the way patients said they like to make healthcare decisions, with half saying they make the final decision, 30% saying they like to share the choice with their physician, and 20% leaving the final decision up to their doctor.

Coylewright reported that her team has developed a TR decision aid, which was tested at the patient forum.

“Our work is clearly an early start,” she said, adding that payers want to see more of these initiatives. “For TR, it’s kind of unique because in the past, some of the barriers for implementing shared decision-making have been clinicians saying; ‘Well, I already know how to do this. I’ve been taking care of, say, aortic stenosis for years and talking about valve replacement,’ but this is new. No one has been talking to frail patients about fixing their tricuspid valve for years. We’ve just recommended diuretics.”

As a result, people are learning about what’s needed in the patient-physician conversation, and the new paper highlights that “patients want more engagement and they want it earlier and they need validated decision aids and those are available,” said Coylewright.