University of North Carolina at Chapel Hill, Pulmonary Hypertension Program, Division of Pulmonary and Critical Care Medicine, Chapel Hill, NC, USA.
Pulmonary Hypertension Association, Washington, DC, USA.
Eur Respir J. 2024 Oct 31;64(4). doi: 10.1183/13993003.01129-2024. Print 2024 Oct.
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 1 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治疗方法的发展。尽管由于治疗，疾病的影响已经减轻，但 PH 及其治疗对患者健康和心理健康的症状和不良反应仍然显著。因此，迫切需要加强对全球范围内患者在护理获得、多维患者支持和倡导方面所面临挑战的理解。此外，还需要对将患者报告的结果纳入诊断和治疗计划的机制的潜在益处和利用进行深思熟虑的分析。本文总结了这些领域。我们报告了全球关于护理获得的患者和提供者的经验和挑战的调查，并讨论了可能的解决方案。还讨论了全球 PH 患者协会的现状。讨论了增强患者协会的潜力并使他们能够提供最大支持的方法。还介绍了评估 PH 患者健康相关生活质量的相关患者报告结果测量的摘要，并就如何在患者护理和研究中使用这些工具提出了建议。最后，提供了有关当前全球威胁（如大流行、气候变化和武装冲突）如何可能影响 PH 患者的信息，并就如何通过先进的应急规划减轻这些威胁提出了见解。
