The full proceedings of the World Symposium on Pulmonary Hypertension which was held in Barcelona 29.6-1.7, 2024, have now been published in the European Respiratory Journal at this link. The proceedings cover the work of the 15 task forces; Task Force n°1’s article is titled “Exploring the patient perspective in pulmonary hypertension” (see below for the Task Force members). The Task Force 1 article can be found here.
The “Patient Perspective” article critically examines the global landscape of pulmonary hypertension care, identifying significant disparities and challenges. It presents a compelling argument for transforming PH management into a more equitable, patient-centered, and globally inclusive approach. By highlighting the main priorities the paper charts a course for a future where PH care is more accessible, effective, and responsive to patient needs worldwide.
The paper calls in particular for:
- Implementing a more holistic, patient-centered approach to PH care, including multidisciplinary teams and supportive rehabilitation, to address all aspects of disease burden.
- Supporting and expanding digital health platforms and solutions.
- Expanding virtual networks to support patients/caregivers (ERN-LUNG)
- Developing strategies to support patients during humanitarian emergencies, including climate change, conflicts, and pandemics.
- Acknowledging the key role that patient associations play globally in support and advocacy and ensuring their sustainability.
- Implementing common standards for patient associations so that they can have a more impactful role in supporting patients and can collaborate effectively with other stakeholders.
- Integrating Patient-Reported Outcome Measures (PROMs) into clinical trials and routine care.
- Actively involving patients throughout the entire lifecycle of clinical trials, from design to dissemination of results and developing lay summaries.
- Addressing health disparities and inequalities in care access and delivery, particularly focusing on reducing diagnostic delays and improving access to treatment.
- Improving guidelines and support for gender-specific issues and reproductive health in patients (impact of restrictions of termination of pregnancy on patients).
Members of the Task Force n°1 at the World Symposium on Pulmonary Hypertension: From left to right: Gergely Meszaros, ERN-Lung project manager, Dr Simon Gibbs, Emeritus Reader in Pulmonary Hypertension at the National Heart and Lung Institute, Imperial College London; Colleen Brunetti, Member of the Board of the PHA USA; Victor Moles, Assistant Professor in the Division of Cardiovascular Medicine at University of Michigan, USA; Pisana Ferrari, Secretary General at the Alliance for Pulmonary Hypertension, Belgium, Prof. Adam Torbicki, Department of Pulmonary Circulation, Center for Postgraduate Medical Education, ECZ-Otwock, ERN-Lung Member, Otwock, Poland; Dr. James Ford, University of North Carolina at Chapel Hill, Pulmonary Hypertension Program, Division of Pulmonary and Critical Care Medicine, Chapel Hill, NC, USA, Hall Skaara, Project Manager at PHA Europe. Austria