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.

1973 年，在日内瓦举行的第一届世界卫生组织原发性肺动脉高压会议上，正式认识到肺动脉高压 （PH） 的全球影响。对疾病发病机制和分类的研究导致了随后几十年中许多疗法的发展。虽然治疗减轻了疾病的影响，但 PH 及其疗法的症状和不良反应对患者的福祉和心理健康仍然很重要。因此，迫切需要加强对全球患者在护理获取、多维患者支持和宣传方面面临的挑战的理解。此外，需要对将患者报告的结果纳入诊断和治疗计划的潜在益处和机制的利用进行深思熟虑的分析。此处包含这些领域的摘要。我们提交了一份关于患者和提供者在护理获取方面的体验和挑战的全球调查报告，并讨论了可能的解决方案。还讨论了世界各地 PH 患者协会的现状。讨论了增强患者联想并使他们能够提供最大支持的潜在方法。总结了用于评估 PH 健康相关生活质量的相关患者报告结果测量，并就将这些工具纳入患者护理和研究提出了建议。最后，提供了有关当前全球威胁（如大流行病、气候变化和武装冲突）如何影响 PH 患者的信息，以及有关如何通过高级应急计划减轻这些威胁的见解。