Exploring the patient perspective in pulmonary hypertension.

IF 16.6 1区 医学 Q1 RESPIRATORY SYSTEM
European Respiratory Journal Pub Date : 2024-10-31 Print Date: 2024-10-01 DOI:10.1183/13993003.01129-2024
H James Ford, Colleen Brunetti, Pisana Ferrari, Gergely Meszaros, Victor M Moles, Hall Skaara, Adam Torbicki, J Simon R Gibbs
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引用次数: 0

Abstract

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.

探索肺动脉高压患者的视角。
1973 年,在日内瓦召开的世界卫生组织第一届原发性肺动脉高压会议上,肺动脉高压(PH)的全球影响被正式确认。对疾病发病机理和分类的研究促使人们在随后的几十年里开发出了多种疗法。虽然治疗方法减轻了疾病的影响,但原发性肺动脉高压及其疗法对患者福祉和心理健康的症状和不良影响依然显著。因此,亟需加强对全球范围内患者在获得护理、多方面患者支持和宣传方面所面临挑战的了解。此外,还需要对将患者报告的结果纳入诊断和治疗计划的潜在益处和利用机制进行深思熟虑的分析。本文对这些领域进行了总结。我们提交了一份关于患者和医疗服务提供者在获得医疗服务方面的经验和挑战的全球调查报告,并讨论了可能的解决方案。我们还讨论了全球 PH 患者协会的现状。我们还讨论了加强患者协会并使其能够提供最大支持的潜在方法。总结了评估 PH 患者健康相关生活质量的相关患者报告结果测量方法,并就将这些工具纳入患者护理和研究提出了建议。最后,还介绍了当前流行病、气候变化和武装冲突等全球性威胁可能对 PH 患者产生的影响,以及如何通过提前制定应急计划来缓解这些威胁。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
European Respiratory Journal
European Respiratory Journal 医学-呼吸系统
CiteScore
27.50
自引率
3.30%
发文量
345
审稿时长
2-4 weeks
期刊介绍: The European Respiratory Journal (ERJ) is the flagship journal of the European Respiratory Society. It has a current impact factor of 24.9. The journal covers various aspects of adult and paediatric respiratory medicine, including cell biology, epidemiology, immunology, oncology, pathophysiology, imaging, occupational medicine, intensive care, sleep medicine, and thoracic surgery. In addition to original research material, the ERJ publishes editorial commentaries, reviews, short research letters, and correspondence to the editor. The articles are published continuously and collected into 12 monthly issues in two volumes per year.
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