Approximately 60 years ago, Dr David Sackett started the movement for evidence-based medicine (EBM). EBM uses all the available scientific proof to come to a decision on the best possible treatment for patients.1
Guidelines improve economic efficiency in healthcare, quality of care and patient outcomes. Their importance cannot be underrated. These are the intentions of the 2025 European Society of Cardiology/European Association for Cardio-Thoracic Surgery (ESC/EACTS) guidelines for the management of valvular heart disease (VHD), which were presented on the 75th anniversary of the ESC at its congress in Madrid, Spain.2
Patient Input
Typically, guidelines cover three dimensions: clinical experience, best research evidence and patient values.3 To ensure that EBM guidelines consider the patient’s perspective, the practice of inviting patients to put forward ideas and comment when developing the guidelines is increasing.4
Two patients were co-author members of the task force for the ESC/EACTS VHD guidelines in the 2-year process leading up to publication. They could challenge ideas and make suggestions, which were then discussed. Where appropriate, suggested topics were added to the draft.
How did that impact the guidelines? Can we truly conclude that the guidelines set a historic benchmark for future iterations? How does the previous version of the ESC/EACTS guidelines from 2021 for the management of VHD differ from the 2025 version?5
Values and Inclusion
The 2025 ESC/EACTS guidelines for VHD include three important breakthroughs regarding the dimension of patient values.
The first is in the methodological preamble. Typically, this section of the guidelines discusses how evidence is selected. It concerns the criteria for deciding on including or withholding studies to lay the foundation of the EBM within the guidelines.
Traditionally, these criteria include the type of study (such as a literature review or meta-analysis), as well as study robustness and accuracy.
For the first time in 2025, in the ESC/EACTS guidelines, “patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) are also evaluated when available as the basis for recommendations and/or discussion in these guidelines”.2
Consequently, research that explicitly includes patient preferences will become increasingly important for future guidelines.
Patient Life Goals in New Section
The patient representatives on the task force for the 2021 ESC/EACTS guidelines played a crucial role in outlining the quality criteria that heart valve teams and centres must meet. However, the concepts of patient-centred care (PCC) and shared decision-making (SDM) remained somewhat in the background.
The 2025 ESC/EACTS guidelines on VHD management elaborate on these issues in a new section that provides more detailed guidance than before about the principles of PCC and SDM and how they should be organised in a high-quality, high-volume VHD centre.
This critical section reinforces the dimension of patient values in the guidelines. These principles should apply to the design of all heart valve centres and teams.
The guidelines list several circumstances in which the SDM process must be embedded to ensure PCC:
- thorough clinical examination, including for concomitant cardiac conditions and frailty;
- patient education and information, using both online materials and face-to-face conversations;
- identifying a clear point of contact for all patient questions related to the disease or treatment type;
- discussing all the symptomatic and prognostic benefits, as well as the advantages and disadvantages of any treatment option;
- providing transparent information regarding the experience and volume of the centre and the operator for a specific procedure; and
- manage misconceptions (e.g. subjective overestimation of the risk of surgery) as well as potential interactions with individual lifestyle factors.
At the end of the process, a shared decision is made between the treating heart team and the informed patient, taking the latter’s preferences and life goals into account.
Anticoagulation
The elements that reflect the deep involvement of the patients on the task force are the recommendations regarding anticoagulation therapy.
Research conducted by a team of health professionals and a patient demonstrated that international normalised ratio self-management improves the time in therapeutic range and the quality of life.6
Based on the available EBM and expertise represented in the task force, both international normalised ratio self-monitoring and self-management received a class 1a recommendation, an upgrade on the previous class 1b recommendation of 2021. In addition, an entirely new patient-oriented class 1a recommendation was added: “Patient education is recommended to improve the quality of oral anticoagulation”.
Conclusion
Including patients in the ECS/EACTS task force ensures their values, preferences and perspectives are thoroughly integrated into VHD management, diagnosis and treatment guidelines.
This approach not only enhances the relevance of these guidelines but also encourages medical professionals to actively engage with patients in discussions regarding key issues such as PCC, SDM and self-management.
As the range of patient-tailored technologies and the vast amount of accessible medical information continue to expand and influence PROMs and PREMs, assuring patient involvement in shaping EBM guidelines will become more important than ever.
The development process of the 2025 ESC/EACTS guidelines for the management of VHD has demonstrated that patients are indispensable members of the task force if a high standard is to be set.