Congenital Heart Disease: Symptoms & Treatment

Decline In Heart Failure Deaths Has Been Undone, Led By People Under 45

Heart failure mortality rates are moving in the wrong direction, a new analysis reports, reversing a decline in deaths that means more people in the United States are dying of the condition today than 25 years ago. The concerning conclusion comes as newer medications are raising hopes for better outcomes in the years to come.

A research letter published Wednesday in JAMA Cardiology tracked U.S. Death certificate data from 1999 through 2021, revealing a steady drop in deaths until 2012, when rates plateaued, then began to rise steadily, and accelerated upward once the Covid-19 pandemic arrived. Disparities between men and women and among racial and ethnic groups moved up almost in lockstep, but there was one glaring exception: age. 

The death rate for people under 45 spiked 906% between 1999 and 2021, compared to increases of 364% for people 45 to 64 years old and 84% for those 65 and older. 

"If we are moving the obesity crisis, the liver crisis, and the diabetes crisis in the United States to younger ages, which is exactly what has been going on in the last decade, that is the result of what we are observing right now: shifting the heart failure incidence curve to a younger age group," said the paper's senior author, Marat Fudim. He is the medical director for the Heart Failure Research Unit and Heart Failure Remote Monitoring at Duke University Medical Center. "Many of the gains, and the acceleration, would actually be attributed to the young individuals with that age under 45."

Heart failure is a chronic, progressive condition in which the heart's ability to squeeze and then pump blood throughout the body weakens. Two main types are defined by a measure called ejection fraction. When the heart relaxes after squeezing normally, it's known as reduced ejection fraction; when it doesn't relax afterward, it's known as preserved ejection fraction. Symptoms can be the same for both groups, split roughly in half, but more medications are effective in treating symptoms for those with reduced than preserved ejection fraction. 

The risk of hospitalization is higher for people with preserved ejection fraction and their quality of life is lower, often making it difficult for them to leave their homes to do basic activities like going grocery shopping or even going to the mailbox. Preserved ejection fraction tends to go along with cardiometabolic disease: obesity, high blood pressure, diabetes, inactivity, "all of those things that we recognize have gotten worse over the last few decades," said Sean Pinney, chief of cardiology at Mount Sinai Morningside. He was not involved in the JAMA Cardiology paper. "We're seeing premature coronary disease in patients who are in their 30s and 40s, which, you know, 20 years ago would have been unheard of." 

Doctors are also seeing medications improve the prevention picture, said Clyde Yancy, chief of cardiology at Northwestern University, making it more urgent to use these and other measures early to control blood pressure, blood sugar, and other risk factors. He was not involved in the study but is deputy editor at the journal.

"We need to move way upstream and think about what we can do a priori to interrupt this process," he said about the data.

Yancy sees three explanations for higher death rates from heart failure: First, the persistence of risk factors and the necessity to intervene there. "That's actionable," he said. Second, the persistence of health inequities. "That is theoretically actionable, but it will require as much public policy as it will require medical therapeutics and lifestyle change." Third is the outsized influence of Covid-19, a phenomenon he said we have yet to understand. 

Over the time period covered in the JAMA Cardiology paper, doctors have gotten better at recognizing heart failure, Fudim and the other experts told STAT. Better testing perhaps contributed to increased heart failure diagnoses, reflected in the dataset from the Centers for Disease Control and Prevention on which the analysis was based. More people are surviving heart attacks now, so more people are living long enough to develop heart failure, which could explain higher prevalence in recent years.

There are limitations to the study's methodology of mining death certificates, the paper's authors note. The cause of death may not be accurate: In the case of deaths from opioid overdoses, for example, heart failure may have been cited when cardiac arrest was the cause, Mount Sinai's Pinney said. The steeper climb in death rates coinciding with Covid could mean people sick enough to be hospitalized and later diagnosed with heart failure were suffering from infection-related inflammation as well as economic distress that limited their health and access to health care, study author Fudim said.

The data preceded wide uptake of the wildly popular new obesity drugs, developed to treat diabetes but also proven effective in improving heart health, among other conditions. These new medications appear to work for heart failure patients across the range of ejection fraction, Pinney said.

"We have to see whether or not these new medications can offset the recent worsening in cardiovascular mortality. But I think the paradox is that at a time that we're seeing these increases in mortality, we also have access to better medications," he said. "We need to do a better job focusing on our systems of care delivery, to get the medications to the patient. If you can get all four classes of heart failure medications into patients with heart failure with a reduced ejection fraction, you can cut mortality in half."

Northwestern's Yancy said he was neither surprised nor sobered by the research letter's findings. 

"This really is quite the new day for those of us that have spent a career focused on heart failure," he said. "We've gone from having very little opportunity to offer hope to a scenario where we can not only offer hope but we can realistically talk about true improvement." 

STAT's coverage of chronic health issues is supported by a grant from Bloomberg Philanthropies. Our financial supporters are not involved in any decisions about our journalism.

Heart Failure Mortality Higher Now Than In 1999

Any gains made in reducing heart failure mortality more than a decade ago seem to have been erased in the current era, with that reversal exacerbated but not exclusively caused by the COVID-19 pandemic, new data show.

"It is actually not that new of an observation that the mortality related to heart failure has been increasing over the last few years," senior author Marat Fudim, MD (Duke University, Durham, NC), told TCTMD. "The important statement is that this is not purely COVID-related because the trend has been present for 10 years but [then] just accelerated. It's been like putting fuel on a smoldering fire."

The study, published as a research letter online ahead of print this week in JAMA Cardiology with lead author Ahmed Sayed, MBBS (Ain Shams University, Cairo, Egypt), showed that among Americans, the number of age-adjusted heart failure-related deaths per 100,000 people declined by 1.62% annually between 1999 and 2005 and by 3.29% each year between 2005 and 2009 before reaching a plateau between 2009 and 2012. But deaths then started to climb, increasing by 1.82% per year from 2012 to 2019 and by 7.06% per year from 2020 to 2021.

Sadiya Khan, MD (Northwestern University Feinberg School of Medicine, Chicago, IL), who was not involved in this study but published a similar analysis of trends in heart failure mortality in 2019, told TCTMD the new data are "unfortunately not surprising."

It's not likely that the pandemic was the direct cause of an uptick in deaths from heart failure, but the disruption it brought to the healthcare system "diffusely infiltrated our ability to provide healthcare" and patients' ability to receive it, she said. "Altogether, it was like a . . . Spark that just accelerated or worsened it."

In the analysis, the researchers used data from the Centers for Disease Control and Prevention Wide-Ranging Online Data for Epidemiological Research (CDC WONDER) resource to identify all heart failure-related deaths between 1999 and 2021. The increases in heart failure-related death rates from 2012 to 2021 were larger than the declines reported from 1999 to 2012, resulting in a 103.2% reversal in mortality.

These reversals occurred in all subgroups of patients, but they were greatest in people younger than 45 (906.3%), those aged 45 to 64 years (384.7%), males (119.0%), non-Hispanic Black individuals (166.5%), rural residents (92.3%), and patients from both the South (118.2%) and Midwest (115.3%).

Fudim said it will be interesting to see how these trends evolve in the coming years given the growing prevalence of metabolic disease and other comorbidities that are associated with worse heart failure-related outcomes. "It leads to a slow shift of the mortality curve to occur earlier and earlier," he said, noting "one particularly striking finding" in the study was that heart failure deaths were growing out of proportion in younger patients. "That is probably explained by the fact that we are moving this obesity, kidney disease, diabetes crisis to younger and younger ages," Fudim noted.

Coding changes might have also played a small role in the trends observed here, according to Fudim. "We have been coding for heart failure and heart failure-related mortality differently over the years," he said, explaining that 20 years ago, certain deaths may have been attributed to uncontrolled hypertension but are now recognized as heart failure. "We are now capturing a lot of more patients that we wouldn't have called heart failure before."

Once heart failure has developed, the cat is out of the bag. Marat Fudim

Training and prevention efforts are needed to begin reversing these trends, Fudim said. "Probably the most important thing is you've got to prevent this disease, meaning once heart failure has developed, the cat is out of the bag," he said. "You want to delay it as long as you can, and sometimes you can't prevent it all entirely. But certainly if you have metabolically driven diseases—comorbidities such as hypertension, hyperlipidemia, diabetes, obesity—these are the diseases we can treat, but we need to focus on them, and it might actually require some degree of focus on prevention of diseases and a redesign of how we deliver care."

With the disparities in care observed between patients in urban and rural settings, Fudim added that the current healthcare system is worsening the problem by closing rural hospitals and not training enough heart failure doctors. "I am a personal believer in preventive care, increased support of remote patient monitoring and remote patient care in rural areas," he said. "We need to train more people; we need to train differently."

There should be less of a "focus on fancy toys and fancy drugs," he said, and a greater emphasis on "the good old drugs we have, good interventions, lifestyle interventions. Just teach people to eat right. Teach people to focus on their comorbidities."

Glucagon-like peptide-1 (GLP-1) receptor agonists will also be "game changers" if accessible to the heart failure patients who need them, Fudim added.

Khan agreed on the need "to disrupt our current approach" to heart failure, noting: "Two things that have been repeatedly reported now are that mortality rates are going up and unacceptable disparities exist with higher mortality for Black Americans. And it doesn't seem like those things are changing, so clearly what we're doing isn't working."

Addressing both access to and the cost of medical care have proven to be important components of improving care quality, she said, noting that the best medications for these patients cost upwards of thousands of dollars. "We continue to make this progress and there is amazing trial data that are being published, but we have a huge implementation gap, and that's what we're seeing."

Lastly, Fudim added that among patients with heart failure today, there is a greater prevalence of the more complex phenotype, heart failure with preserved ejection fraction, which is "very hard to decipher."

A heterogeneous disease, heart failure cannot be fixed with a single solution, Fudim said, adding that he would like to see future research "drill down deeper into what type of disease is driving this mortality, phenotypes that might be missing, and then keep looking at what interventions might help."

'Mind Your Heart' Study To Enroll Patients Diagnosed With Heart Failure

Swollen legs, ankles and shortness of breath are just a few of the symptoms of congestive heart failure.

"My dad had heart failure. I learned a lot just to see him struggle with some of the challenges. For example, heart failure has a very complex treatment, so it's hard to remember to take all your meds," said Dr. Elena Salmoirago-Blotcher, a senior research scientist in the cardiology department at Rhode Island Hospital, and an associate professor at Brown University.

She talked about her late father, Dario. He's a major reason why she now focuses her research on how to get patients with heart failure better care for themselves.

Cognitive impairment, or forgetfulness, is a problem.

So is something called interoception, the ability to sense changes in the body, which leads to patients downplaying their symptoms until they land in the emergency department.

"Can a mindfulness training delivered over the phone so to make it reachable and easy for older folks improve the ability to pay attention, to increase your executive function and cognitive ability so that you're more able to take care of yourself," she said.

Mindfulness training is a type of meditative therapy that can help you focus and become more aware.

In an earlier pilot study funded by the NIH:

"We saw, we observed an improvement in several measures," said Salmoirago-Blotcher.

Now they're two years into a larger study, also funded by the NIH.

Half the participants receive heart failure educational pamphlets.

The others, a weekly half-hour phone call from a trained mindfulness coach for eight weeks.

"People don't really, they want the human contact," said Salmoirago-Blotcher.

After the eight weeks, it is hoped patients learn to do the mindfulness meditation on their own.

To make this more objective, they do lab tests before and after to actually see if it's making a difference.

So far, they've enrolled about 45 participants. They're looking for a total of 176 patients in Rhode Island with a diagnosis of heart failure to take part.

If you're interested in learning more call this number: 401-793-8233.

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