What are PROMs and PREMs and why do they matter in heart care?
When it comes to heart care, success is often measured in numbers: test results, scans, and survival rates. These measures are important. But they do not tell the full story. They cannot show how patients feel in their daily lives, how well they deal with their illness, or how they experience their care.
This gap matters most for long-term conditions such as heart disease, as people may may need lifelong treatment, regular check-ups, and need to change their lifestyle. Results from medical tests alone cannot show whether patients understand their treatment, feel supported by healthcare staff, or face problems that make it hard to manage their condition over time.
To better understand the health status of a patient and what life with heart disease is really like, researchers and healthcare providers are listening more closely to patients themselves. This is where patient-reported outcomes and patient-reported experiences come in.
Listening to patients in a structured way
Patient-reported outcomes (PROs) describe how patients rate their own health. This can include symptoms such as breathlessness or tiredness, overall quality of life, physical ability, and emotional wellbeing. Instead of relying only on tests, PROs show how people feel and get along in everyday life.
Patient-reported experiences (PREs) focus on how patients experience healthcare. These include whether information is explained clearly, whether patients feel involved in decisions, and how well different parts of care work together.
PROs and PREs are usually collected through questionnaires. These are called patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs). Together, they add valuable information to medical data, helping paint a more complete picture of the health status, the progression of health and the quality of care.
What does current research show?
PROMs and PREMs are increasingly seen as important, but they are not used in the same way everywhere. To understand how they are currently applied in heart care, the iCARE4CVD project carried out a large scoping review. The review analysed nearly 400 studies from around the world to understand current practices and find gaps.
One key finding is that studies are much more likely to measure patient-reported outcomes than patient-reported experiences. Quality of life is the outcome most commonly measured. General health and symptoms such as depression are also often assessed. Although the review identified 140 different PROM questionnaires, only a few are used regularly across studies.
Patient experiences are measured in an even less consistent way. Many studies use questionnaires created for a single project rather than well-tested, and validated tools. This makes it hard to compare results between studies or to learn from patient feedback over time.
The review also showed that most research focuses on people with heart failure. PROMs and PREMs are studied far less often in other heart conditions, such as heart rhythm problems or valve disease. As a result, research reflects the experiences of some patient groups better than others.
Overall, the review suggests that while patient perspectives are collected more often than before, they are not yet gathered in a consistent way that allows learning and improvement across healthcare systems.
Why does this matter for patients?
This research highlights an important issue: even when patients are asked about their health or their care, their answers do not always lead to a real change. Because patient-reported information is collected in many different ways, it is difficult to compare results or use them to improve care.
Without shared and reliable measures, healthcare providers and policymakers struggle to identify gaps in care or understand what matters most to patients. This is especially true for patient experiences, which are often measured using questionnaires that have not properly been tested.
Importantly, the researchers stress that the goal is not to burden patients with more questionnaires. Instead, the aim is to choose and use better tools. More consistent and well-validated measures can reflect patients’ priorities more clearly and support truly patient-centred heart care.
What are the study’s limitations?
Like all reviews, this study has limits. It looked at existing research rather than collecting new information. It also mapped which tools are used but did not judge which tools work best. Because many studies focus on heart failure, the findings may not fully represent patients with other heart conditions.
Despite these limits, the review gives a clear overview of how patients’ voices are currently included in heart care, and where important gaps remain. By pointing out differences and missing areas, the research helps prepare the ground for better, more patient-centred care in the future.
Ultimately, PROMs and PREMs help ensure that success in heart care is measured not only by numbers, but also by how people feel, function, and experience their care in everyday life.
What’s next?
The findings of the scoping review make one message clear: collecting patient-reported outcomes and experiences is only meaningful if these measures truly reflect what matters to patients. To move from mapping existing tools to improving their use in practice, the next step must involve patients themselves.
Building on the results of the review, the research team worked closely with heart disease patients to better understand their priorities. Participants were asked to rank different patient-reported outcomes based on their importance in daily life, and workshops were organised to allow them to share their views in more detail, explains Jana Seuthe, one of the lead researchers in WP4.
“These conversations helped us better understand how patients experience PROMs and what they expect from them. By listening directly to patients, we can ensure that these measures focus on what truly matters to them and are used in ways that help improve heart care.”
