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The global impacts of pulmonary hypertension (PH) were formally recognised in 1973 at the 1st World Health Organization meeting dedicated to primary pulmonary hypertension, held in Geneva. Investigations into disease pathogenesis and classification led to the development of numerous therapies over the ensuing decades. While the impacts of the disease have been lessened due to treatments, the symptoms and adverse effects of PH and its therapies on patients' wellbeing and mental health remain significant. As such, there is a critical need to enhance understanding of the challenges patients face on a global scale with respect to care access, multidimensional patient support and advocacy. In addition, thoughtful analysis of the potential benefits and utilisation of mechanisms for the incorporation of patient-reported outcomes into diagnosis and treatment plans is needed. A summary of these areas is included here. We present a report of global surveys of patient and provider experiences and challenges regarding care access and discuss possible solutions. Also addressed is the current state of PH patient associations around the world. Potential ways to enhance patient associations and enable them to provide the utmost support are discussed. A summary of relevant patient-reported outcome measures to assess health-related quality of life in PH is presented, with suggestions regarding incorporation of these tools in patient care and research. Finally, information on how current global threats such as pandemics, climate change and armed conflict may impact PH patients is offered, along with insights as to how they may be mitigated with advanced contingency planning., Competing Interests: Conflict of interest: H.J. Ford reports grants from United Therapeutics, Merck, Gossamer Bio, Janssen, Cereno and Enzyvant, consultancy fees from United Therapeutics, Merck, Enzyvant, Liquidia, Janssen and Gossamer Bio, and a leadership role with the Pulmonary Hypertension Association. C. Brunetti reports support for the present work from Pulmonary Hypertension Association (USA), consultancy fees from Bayer and Aerovate, support for attending meetings from Pulmonary Hypertension Association, and a leadership role with Pulmonary Hypertension Association. P. Ferrari has no potential conflicts of interest to disclose. G. Meszaros reports consultancy fees from PHA Europe, EU-PFF and ERN-Lung, payment or honoraria for lectures, presentations, manuscript writing or educational events from Patient Expert Center vzw, and support for attending meetings from ERS. V.M. Moles reports grants from Janssen, Acceleron Pharma, Axon Therapies, Keros Therapeutics and Sumitomo Pharma America/Parexel International LLC, support for attending meetings from Foresee Pharmaceutical, participation on a data safety monitoring board or advisory board with United Therapeutics and Gossamer Bio, and is Assistant Editor at ACC.org Section of Pulmonary Hypertension and Venous Thromboembolism. H. Skara reports participation on a data safety monitoring board or advisory board with Aerovate. A. Torbicki reports consultancy fees from Bayer, Gossamer, Janssen and MSD, payment or honoraria for lectures, presentations, manuscript writing or educational events from AOP, Bayer, Janssen, Pfizer, MSD and Ferrer, support for attending meetings from Pfizer, AOP and Ferrer, and participation on a data safety monitoring board or advisory board with Boston and Janssen. J.S.R. Gibbs reports consultancy fees from Acceleron, Aerovate, Actelion/Janssen, Gossamer Bio, LG Chem, Keros, Merck, Bial Labcorp and United Therapeutics, and participation on a data safety monitoring board or advisory board with Merck, Gossamer Bio, Bial Labcorp, Keros and Actelion., (Copyright ©The authors 2024.)

Pulmonary arterial hypertension (PAH) is a rare, debilitating and rapidly progressive disease. Although there have been important medical advances in PAH management, the search for a cure continues. Despite an increased understanding of the disease, data on the wider effect of PAH on patients and carers, beyond the clinical symptoms, are still limited. In order to explore this, a large-scale international survey investigated four key areas affected by PAH (physical and practical, emotional, social, and information needs) and provides new insight into patients' and carers' experiences of living with the disease. The results from the survey highlight not only the limited ability of patients to carry out everyday tasks, but also the financial impact and social isolation experienced by both patients and carers. The study confirmed that a decline in a patient's World Health Organization functional class, which indicates an increase in clinical severity of the disease, is associated with greater limitations. Results from the survey demonstrate the need for multidisciplinary PAH management and a comprehensive standard of care to assess and improve all aspects of well-being for both patients and carers. In addition, they underline the need for updated PAH guidelines that address these needs.