Traditional risk models for pulmonary arterials hypertension rely heavily on objective measures. While essential, they often miss the patient’s lived experience—symptoms, quality-of-life challenges, and life-context factors that shape treatment decisions.
At the symposium organised on 29 September 2025 by MSD at the European Respiratory Society Annual Congress in Amsterdam, on the topic of “The Value of the Patient Perspective in Pulmonary Arterial Hypertension Risk Assessment Evaluation”, chaired by Prof. Marc Humbert, panel members explored the value of integrating the patient perspective into routine risk assessment. Through live polling and discussion, the panel members reflected on how to move toward more person-centered, shared decision-making in pulmonary arterial hypertension care.
🔹 Patient advocates Gergely Meszaros JD, MSc , project manager at ERN-LUNG and Louise Bouman – van der Waal Chair of Stichting Pulmonale Hypertensie / PH Association the Netherlands and Member of the Board of the Alliance for Pulmonary Hypertension, highlighted the importance of expanding the use of PROMs (Patient-Reported Outcome Measures), and opening conversations with simple, human questions about daily struggles
-Building trust through shared decision-making
🔹 Prof. Marion Delcroix reminded us of the challenges: patients may not always complete questionnaires, and healthcare professionals often struggle to find time for in-depth conversations.
The message was clear: embedding the patient voice is not always easy, but it is vital. By asking better questions, listening actively, and making space for patient perspectives, we can create care strategies that truly reflect what matters most to people living with pulmonary arterial hypertension.
Photo below, from left: Prof. Marc Humbert, Kristian Löbner, MD, PhD (MSD), Prof. Marion Delcroix, Louise Bouman – van der Waal Bouman and Gergely Meszaros JD, MSc
