Heart failure (heart failure) is a serious condition that affects many people worldwide, putting a strain on patients, caregivers, and healthcare systems. As digital health technologies advance, they offer new ways to help manage chronic conditions like heart failure.
In fact, many patients now use digital health services, such as telemedicine or mobile health apps, to manage their health conditions, but it’s still unclear how they feel about these services or if they truly meet their needs.
Understanding patient experiences is important for improving care, not just by looking at safety and effectiveness, but also by knowing how patients perceive their treatment. To investigate this, our team at German Foundation for the Chronically Ill conducted a scoping review to explore how Patient-Reported Experience Measures (PREMs) are used in digital healthcare, particularly in heart failure patients.
What are PREMs?
PREMs are tools used to gather feedback from patients about their experiences with healthcare services. Unlike traditional measures that focus on clinical outcomes (like blood pressure, survival rates, or hospitalization), PREMs focus on the patient’s perspective — how they feel about the care they received. This includes aspects like communication with healthcare providers, ease of access to services, and overall satisfaction with the treatment process. By understanding patient experiences, healthcare providers can improve the quality of care, making it more patient-centred.
What was the goal of the research?
The research aimed to explore how PREMs are used in healthcare, particularly in digital health services for managing chronic diseases like heart failure.
How was the research conducted?
The team of the German Foundation for the Chronically Ill conducted a “scoping review”, which entailed a searched through a large medical database (Medline) to find relevant studies that discuss the use of PREMs in digitally supported care. The focus was on adult patients with chronic diseases, particularly those receiving care through digital methods like telemedicine or remote monitoring.
The search considered studies published both in English and German. The research team included studies that met specific criteria, such as involving adult patients and focusing on digital care processes. They excluded studies involving children, acute diseases, or those that didn’t measure patient experiences through PREMs.
What did the team find?
The research team identified 29 relevant studies out of 538 articles. These studies included patients with various chronic diseases, with five specifically focusing on heart failure. The key findings were:
- Most PREMs used in these studies were not standardised. This means they were often created specifically for the study at hand and were not widely tested or validated.
- Nine main dimensions of patient experience were identified in these studies. This included care delivery, privacy, the relationship between patients and physicians, patient involvement in decision-making, and experiences with technology.
- In studies focusing on heart failure, PREMs were used to assess patient satisfaction with telemedicine services, self-management tools, and home-based exercises. However, these tools were often self-developed and not standardized, making it difficult to compare results across different studies.
What were the main conclusions?
The research concluded that while PREMs are crucial for understanding and improving the quality of care, especially in digital health settings, there is a significant lack of standardised and validated tools. Most PREMs are custom-made for specific studies, which makes it difficult to generalise findings or apply them broadly across different healthcare settings.
The researchers suggest that future efforts should focus on developing and validating standardised PREMs that can be used consistently across different studies and healthcare settings. This would allow healthcare providers to better understand patient experiences and improve the quality of care in a more patient-centred way, particularly as digital health solutions become more common in managing chronic conditions like heart failure.
What were the review’s limitations?
While the research marks an important step forward, it had some limitations. This scoping review relied on a single database (Medline), which may have led to the exclusion of relevant studies from other sources. Additionally, many of the PREMs identified were created specifically for the studies and lacked standardisation, making it difficult to compare results across different studies. Lastly, the term “digitally supported care” can have different meanings, and the study used a single definition. Other interpretations might include additional relevant literature not covered in this review.
Next steps
This research is the basis for a broader analysis of how patients assess their health and their experiences. To achieve this, a thorough review will be conducted to identify Patient Reported Outcome Measurements and PREMs used to evaluate the quality of care for cardiovascular diseases, especially heart diseases. The results will be integrated into the development processes within iCARE4CVD.
Read the full article
This article was presented at this year’s GMDS Annual Meeting in Dresden and was also published in the book series “Studies in Health Technology and Informatics”.
