Listening first: helping patients understand HFpEF
For many people living with heart failure, the hardest part is not managing symptoms. It is understanding what is actually happening inside their heart.
During Heart Health Month, we are highlighting recent work by Yulia Khodneva, M.D., Ph.D., that takes this issue head-on. Her study, published in the Journal of the American Heart Association, focuses on heart failure with preserved ejection fraction, or HFpEF, a condition that is common and frequently misunderstood.
The study builds on an earlier pilot project, “Improving Patient Knowledge of Heart Failure with Preserved Ejection Fraction: Patient-centered and Community-engaged Pilot Study,” supported by the Forge AHEAD Center. That project examined where patients’ understanding breaks down and how they prefer to learn about their condition, with a focus on people from economically disadvantaged and underserved communities. Through interviews and surveys, Khodneva and her team worked to understand how education and health promotion efforts could reflect patients’ lived experiences and priorities.
The resulting paper, titled “Nothing Is Wrong With My Heart: Patient Knowledge and Experiences of Heart Failure With Preserved Ejection Fraction,” draws from in-depth interviews with people living with HFpEF. It offers a clear picture of how patients interpret the diagnosis and what it means in their day-to-day lives.
What HFpEF is, and why it is confusing
HFpEF occurs when the heart’s pumping function appears normal on imaging, but the heart muscle is stiff and does not relax properly. As a result, the heart cannot fill adequately. People may experience fatigue, shortness of breath, swelling, and repeated hospital visits, even while being told that their heart is functioning well.
As Khodneva explains, “The heart is pumping as it’s supposed to do, but it doesn’t relax and fill the way it should. Overall, it still can’t do its job well.”
This disconnect between test results and lived symptoms can leave patients unsure about the seriousness, or even the reality, of their condition.
A clear gap in understanding
One of the most striking findings was how limited participants’ understanding of their diagnosis was. None of the participants identified their condition as HFpEF. About two-thirds knew they had heart failure. Some believed there was nothing wrong with their heart at all, despite ongoing symptoms and regular care.
“Understanding one’s diagnosis is essential for informed treatment planning and engagement,” Khodneva said.
Notably, this gap was seen across education and income levels, pointing to a broader issue in patient-clinician communication rather than a lack of ability or interest among patients.
What is HFpEF?
“The heart is pumping as it’s supposed to do, but it doesn’t relax and fill the way it should. Overall, it still can’t do its job well.”
-Yulia Khodneva, M.D., Ph.D.
Why information alone is not enough
Participants made it clear that education alone would not solve the problem. Many described confusion about why they were taking certain medications, limited time during clinic visits to ask questions, and infrequent follow-up. Others were unsure about safe levels of physical activity, appropriate nutrition, or how to cope with anxiety related to their symptoms.
“It wasn’t just about education,” Khodneva said. “Patients described gaps in communication, follow-up and support for emotional well-being.”
These experiences highlight the need for care that is ongoing and holistic, not limited to brief clinical encounters.
The role of real-life constraints
While confusion about HFpEF was widespread, the study also showed how practical barriers shaped patients’ ability to engage with care. Challenges such as transportation, financial strain, and food insecurity affected access to tools like blood pressure monitors, understanding dietary recommendations, and obtaining specialty care.
“Support strategies need to be adaptable,” Khodneva said. “A one-size-fits-all approach does not meet the diverse needs of patients.”
This perspective is guiding her continued work on interventions that are realistic and responsive to patients’ circumstances.
Learning with patients, not just about them
The study also points to opportunities to improve clinician awareness of HFpEF, particularly among non-specialists. Khodneva is involved in developing continuing education programs for primary care and internal medicine clinicians to support clearer understanding and communication about the condition.
“Effective change begins by listening,” Khodneva said. “Solutions grounded in patients’ experiences are more likely to be sustainable and meaningful.”
Why this matters during Heart Health Month
Heart Health Month often emphasizes prevention, but it is equally important to focus on people already living with heart failure. This research underscores how clear communication, attention to context, and meaningful patient engagement can improve care.
“Awareness and inclusion are foundational,” Khodneva said. “By prioritizing what matters to patients, we improve not just understanding, but outcomes.”
Read more if you are interested in the study’s methods, patient perspectives, and detailed findings.
