Home Heart Failure Symptoms What Do Heart Failure Patients Really Want, and Do Doctors Get it?

What Do Heart Failure Patients Really Want, and Do Doctors Get it?

30 min read

NASHVILLE, Tennessee — Do clinicians and their patients with heart failure see eye to eye on what their management plan should achieve?

In an experiment conducted at the recent Heart Failure Society of America 2018 Meeting, a panel of patients at different stages of advanced heart failure and on their own unique journeys with the syndrome met on stage with a similar number of the field's prominent clinicians. They were complemented by several hundred audience members — heart failure professionals of all stripes — who participated in a wide ranging discussion using the room's interactive polling system.

The results ranged from reassuring to surprising.

For example, clinicians found it easy to appreciate the subversive effects of dyspnea and poor sleep quality on patients' quality of life. But they also underestimated patients' wishes to keep working and, notably, their resolve to put survival ahead of symptom improvement as a treatment goal.

The patients, who ranged clinically from stable on medication to dependent on a left ventricular assist device (LVAD) as a bridge to transplantation, also called out some doctors and nurses in their own experience for falling short in at least two key nonmedical aspects of quality care.

Attempts to Measure PROs

The whole exercise began as a progress report on the use and stature of patient-reported outcomes (PROs) in heart failure management plans, which was led by Paul Heidenreich, MD, Stanford University, Palo Alto, California. He defined PROs as self-reported health status "without interpretation or modification by providers."

That excludes New York Heart Association functional class as a PRO, and puts the focus on quality-of-life instruments like the Kansas City Cardiomyopathy Questionnaire (KCCQ) and the Minnesota Living With Heart Failure Questionnaire (MLHFQ), Heidenreich noted.

The KCCQ and MLHFQ are pervasive in the heart failure literature but probably not in clinical practice. Perhaps tellingly, none of the patients on the panel raised a hand when asked whether they had ever filled out one of them.

In the first electronic polls Heidenreich conducted that afternoon, the room of heart failure clinicians resoundingly favored consideration of PROs in both research and in their practices. Asked which of NYHA class or PROs make the better clinical-trial primary outcome, only 6% preferred NYHA class, while PROs were favored by 44%. They would be equally important in that setting, said 39% of the crowd.

Should PROs be routinely used in practice? A full 91% responded "yes."

What Is Most Important to You, Besides Living Longer?

Of the audience of clinicians participating in the electronic poll, responding to that central question of the afternoon as they believe their heart failure patients would respond:

  • 34% said proper breathing

  • 26% said maintaining activities of daily living

  • 23% said avoiding hospitalization

  • 17% said the burden placed on their personal caregiver.

"Breathing is a litmus test of how my day is going to go," patient panelist Todd Taylor, from Atlanta, said in response to the poll question. If poor breathing causes a night of sleeplessness, "I know it's going to be a bad day," he said. "If the breathing is really good, everything else sort of falls into place."

Taylor, now 53 years old, was diagnosed with a cardiomyopathy at age 23. He has an LVAD and is on a transplantation wait list.

"If you can't breathe, you can't think of anything else," said Bob Romer, from Framingham, Massachusetts, also on the patient panel. Assuming breathing is okay, he said, he would rank foremost the burden his disease puts on his personal caregivers.

Romer's heart failure journey began at age 38, and he had a left ventricular ejection fraction of only 20% at time of the diagnosis. Over the years, he has had three implantable defibrillators and two successive LVADs, and he underwent transplantation on Valentine's Day in 2013.

One of the issues Taylor cited was also noted by several of the clinician panelists as perhaps their patients' foremost issue. "If I could only select one, I'd say burden on caregiver is the most important thing," Heidenreich said, but how important that is to patients probably depends on their severity of heart failure.

From the clinician panel, Barry Greenberg, MD, University of California, San Diego, La Jolla, seemed to agree. Caregiver burden "is one I hear a lot from my patients."

Noting that caregiver burden was only the fourth most common answer in the poll, Robert L. Page II, PharmD, University of Colorado, Aurora, said maybe it didn't register as a higher priority "because we really can't measure it. Everything else on that list of what's most important, we can."

Also speaking from the panel, Lynne W. Stevenson, MD, Vanderbilt University, Nashville, Tennessee, observed that in her experience, what patients see as important likely depends on their symptom profile and whether or not they are hospitalized. But her take was in line with Taylor and Romer.

When outpatients with chronic heart failure are asked to rank their symptoms by importance, Stevenson said, the results vary, but fatigue and difficulty breathing rank at about the same level.

But patients queried after presenting to the hospital "ranked quality of life very closely with how they ranked quality of breathing when their quality of breathing was poor. And when breathing was good, other things were more important."

Also from the clinician panel, Joann Lindenfeld, MD, also of Vanderbilt University, agreed that fatigue is high on the list for her patients, but so is the "overall burden of care," which would include, for example, the abundance of medications and logistics in making the many clinic visits.

Less than a quarter of the audience polled thought that avoiding hospitalization was the most important issue for patients with heart failure, but comments from two members of the patient panel illustrated how divergent their views of hospital admission can be.

"My biggest thing was staying out of the hospital, usually to my detriment," said panelist Mike Ashworth, from Warwick, Rhode Island, who had been wait-listed for 5 years before receiving a new heart in 2014. "I hated going to the hospital."

In contrast, patient panelist John Godwin, from Paris, Texas, said, "A hospital for me was a place of safety and security." He was on an LVAD only 16 days before undergoing heart transplantation in July 2013, at age 48.

What Do You Consider "Good" Improvement?

Of the session's audience members participating in the electronic poll, responding as they believed their patients would respond:

  • 41% said ability to participate in a previously impossible recreational activity

  • 26% said ability to continue working

  • 23% said sleeping through the night (and 5% said when daily naps aren't needed)

"I think you could make a cogent argument for all of these" as relevant ways gauges of treatment success, said Greenberg.

"The one that I would add, though, would be freedom from side effects and urgencies brought on by medical therapy, particularly diuretics," he said.

"I hear from a lot of my patients that what bothers them the most is the restriction put on their lives by having to take diuretics on a regular basis." Many of his patients would rank improvement in that area as an indicator of treatment success, Greenberg said.

"I would say sleep," Romer said, noting he was able to sleep only 20 minutes to 2 hours per night during the 6 months prior to receiving the LVAD.

But most other patients on the panel had a different, single answer, predicted by only 26% of the audience.

"Work's important to me, probably more than it should be. It tells me that I'm still functioning, able to earn a living, and leave the house," Godwin said.

"Definitely work," said Taylor. "That's the one thing that makes me feel of value, for lack of a better word. And without work, you can't have insurance. Without insurance we can't pay you guys," he said to the room of clinicians.

Ashworth said he had to retire from his job in the insurance industry, but would have preferred to stay.

But those views may not be typical of most patients with heart failure; for many, working a job isn't even an option and may not even figure into their idea of good treatment response, said Biykem Bozkurt, MD, PhD, DeBakey Veterans Affairs Medical Center and Baylor College of Medicine, Houston.

Speaking from the audience during a question-and-answer session, Bozkurt pointed out that most of the patient panelists were able to keep working at their professions while battling their disease, and so aren't necessarily representative. And their willingness to travel to Nashville to share their heart failure experience publicly at a medical meeting defines them as a mobile and especially motivated group.

Still, patients unable to work, or for whom working is less important, may find recreational activities, hobbies, once-routine daily chores, or other pursuits engaging or rewarding.

"It seems like they associate activities with their status," observed clinician panelist Nancy M. Albert, PhD, Cleveland Clinic, Ohio.

For example, Albert said, patients who respond well to a change in their medical therapy may feel so much better that they can resume tasks or recreation they had largely given up.

"They can now mow the lawn, and they're thrilled. It's like their job. When people can relate to an activity, I think they can assess for themselves whether they are getting better or worse," Albert said.

"Almost everybody has some activity in their life that defines who they are," agreed Stephenson. It may seem mundane to someone not struggling with heart failure, but indeed, "for many of our patients, it's cutting the lawn."

If You Had a Remaining 10 Years to Live With Heart Failure…

How much of that time would you be willing to give up to live without symptoms? Of the audience members responding from their patients' point of view,

  • 40% said "about half"

  • 35% said "some," defined as 1 to 3 years

  • 23% said "most," defined as 7 or more years

  • 3% said "almost none," defined as less than 1 year

A majority of patients on the panel surprised some of the clinicians by choosing the least common audience response — almost none.

"I've had heart failure for 27 years. I just turned 60 and I'm doing whatever it takes to live, to be with family and friends. So I wouldn't give up anything," said Herman Williams, MD, MPH, from Brentwood, Tennessee, who is executive director of a major regional healthcare system.

Godwin also said he wouldn't give up any time. One learns to live with heart failure, he said. "You don't like it, but you don't let it get you down. You can survive that way."

Taylor agreed. "I've plugged through this for many years. I've got small children," he said. "I wouldn't want to give up any time, because I want to spend that time with my kids. And I've got to be productive and the breadwinner for as long as I can."

In her experience, Albert said, patients who would choose to give up most of their remaining 10 years in exchange for no symptoms tend to be, not surprisingly, the most symptomatic of patients. Those who would give up almost no time "are almost everybody else." She was "pretty shocked" that a full 40% of clinicians in the audience answered "about half."

Stevenson, whose research has looked at this very issue, said she chose "some" time as her poll response. "In all of the studies that I've seen from patients, it's very bimodal. Most people are willing to trade almost all of it, or very little of it," she said, concurring with Albert.

"In a way, that does make our job as clinicians a little bit easier," Stevenson said. If the patients say either "I will do almost anything to feel better" or "I've got to live longer," the treatment goals are clearer than for patients who say they want a more even balance of symptom relief and survival.

Other factors are likely to affect how patients answer the question, some panelists observed. "I really think it is highly dependent on the age of the patient and also where they are in the journey," Page said.

Later in the session, Ashworth proved the point. "At age 72, I wouldn't now give up any time. But at 47, I would have given up some of the time."

That speaks to a challenge faced by the US Food and Drug Administration (FDA) in its efforts to approve PRO-related end points for clinical trials in the design stage, said Mona Fiuzat, PharmD, Duke University, Durham, North Carolina, on the panel in her capacity as senior scientific advisor to the agency.

"How do you know what questions to ask, for different patients, when they're all at all different stages of heart failure? It's very hard to come to an agreement on what is most important," she said.

Also present for the session, Norman Stockbridge MD, PhD, who directs the Division of Cardiovascular and Renal Products at the FDA Center for Drug Evaluation and Research, seemed particularly struck by how the patient panel consistently prioritized survival over symptoms.

That's important to the drug-approval process, he said, when the agency considers, for example, data in a New Drug Application suggesting a mortality risk associated with an agent that is vying for symptom-relief indication.

Do Doctors Get It?

The session wrapped up with the patients' take on how well the clinicians understood them, judging from their discussion and poll responses. Patients were asked, "Did we get it right?"

The consensus? Largely yes, but with shortfalls and without necessarily addressing all important issues.

From the patient panel, Williams appeared satisfied with what he heard regarding one of his top concerns: "Understanding that patients all have different symptoms, different priorities, they come in different packages. I heard that from all the panelists. You have to ask the patient what's most important."

Ashworth agreed, and said of his previous experiences as a patient, "My team asked all the right questions. Everything I had to say, they took into account."

Pointing to a major shortfall among clinicians in his care experience, patient panelist Neil L. Spector, MD, said "I don't think there was enough emphasis put on the emotional components in going through being healthy to being sick."

Spector, a Duke University oncologist, developed a cardiomyopathy considered secondary to Lyme disease and underwent heart transplantation about 9 years ago.

There was much focus on his medications, activity level, and other aspects relevant to the progress of the disease process itself, Spector said, "but I think there needs to be more on how the patient's doing — what are your stresses?" And if clinicians don't have time to ask questions about that, they should refer the patient to someone who can.

Romer seemed to agree that there is inadequate attention paid to patients' emotional needs. "I was in the hospital for a year and was taken care of. And I felt guilty because my wife was at home trying to do everything else — take care of the house, pay the bills, take care of the dog, have a job, and visit me at the same time."

He said he would recommend counseling or other participation by behavioral health professionals not just for the patient, but also for close family members involved in the patient's journey.

Taylor said whether clinicians caring for him "got it right" depended on the stage of his care. Currently, he's under the transplant team's care, "and I'm truly impressed with everything they've done," he said.

"Leading up to this, I've had providers who don't hear a damned thing I say." For example, "they'll say, 'your ankles look good.' Well, I don't hold water in my ankles, I hold it in my gut. But they don't ever want to hear that," Taylor said.

"So, honestly, the biggest issue I've had leading up to this, with my heart failure, is people who just don't listen."

"It's really hard, in the 20 minutes that sometimes we have with patients, to really sit down and listen," acknowledged clinician panelist Ileana L. Piña, MD, MPH, Albert Einstein College of Medicine and Montefiore Medical Center, New York City.

"It's something that we teach our fellows and residents: You still have to go in there and get a good history. And don't assume anything."

Heart Failure Society of America (HFSA) 22nd Annual Scientific Meeting. Presented September 16, 2018.

Follow Steve Stiles on Twitter: @SteveStiles2. For more from theheart.org | Medscape Cardiology, follow us on Twitter and Facebook.

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