Health care professionals are increasingly trying to understand heart disease care from the patient’s point of view — not just through test results, but by asking patients directly about their health and experiences. This is especially important for conditions such as heart disease, which often upend a person’s life, as lifestyle changes, lifelong treatment and regular check-ups are needed. The results from medical tests alone don’t take into consideration how these changes impact everyday life, whether patients understand their treatment, or feel supported by healthcare staff.
"Often, treatment success is measured by outcomes like survival rates. We wanted to shift the focus towards the patients and how they report their own health and medical journey and by doing that paint a more complete picture about a person’s health and disease progression,” says Bettina Zippel-Schultz, Head of Innovation in Healthcare at the German Foundation for the Chronically Ill.
Tools called PROMs (patient-reported outcome measures) and PREMs (patient-reported experience measures) can help fill in the gaps by asking patients how they feel and how they experience their care.
Patient-reported outcomes (PROs) describe how patients rate their own health, including symptoms such as breathlessness or tiredness, overall quality of life, physical ability, or emotional wellbeing. Instead of relying only on tests, PROs show how people feel and get along in everyday life.
On the other hand, 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.
Scoping the literature
The iCARE4CVD project reviewed 390 studies to see how PROMs and PREMs patient surveys are being used in heart disease care.
What they found was that although PROMs and PREMs are widely used, there is a broad range of different tools. For instance, more than half of the PREMs used in the investigated studies were created by researchers themselves rather than being standardised tools, making comparisons across studies difficult.
Interestingly, the review also highlighted that assessment tools about health outcomes (PROMs) were used much more frequently than those about patient experiences (PREMs). This could be due to national guidelines that promoted PROMs. When it came to patient experiences, the most common topics that patients were asked about included managing their own care, their treatment experience, their satisfaction with care, how much they understood their condition or whether they stick to treatment plans.
Room for improvement
The results highlight that even though patient perspectives are being collected more often than before, the answers do not necessarily translate into real change or better care for heart patients yet. Because different organisations collect data in different ways, it is not easy to make comparisons and extract learnings.
It was also clear that most research focuses on people with heart failure, and that PROMs and PREMs are studied far less often in other heart conditions, such as heart rhythm problems or valve disease. As a result, current research reflects the experiences of some patient groups better than others.
Next steps
The iCARE4CVD project followed up on this review by organising workshops where patients were able to rank the different patient-reported outcomes based on their importance in daily life. They were also encouraged to share their views and experiences in more detail. The workshops helped the researchers to better understand what patients expect from PROMs and PREMs and how these measures can be adapted to focus on what matters for patients, and improve heart care in the future. The public-private nature of the iCARE4CVD project was a good setting for these workshops.
“Working on patient reported outcome and experience measures within iCARE4CVD has been an integral part of the project’s scope and marks a shift within cardiovascular care,” says Zippel-Schultz.
“The collaboration between public and private partners has been particularly beneficial in terms of developing the study design and interpreting the results, as it has allowed for the discussion of different approaches and priorities."