Cardiovascular Diseases and Internal Medicine, Mayo Clinic, Rochester, MN, USA.
Pulmonary Hypertension Association Europe, Vienna, Austria.
Eur Respir J. 2019 Jan 24;53(1). doi: 10.1183/13993003.01919-2018. Print 2019 Jan.
The assessment of objective measurement of cardiopulmonary status has helped us achieve better clinical outcomes for patients and develop new therapies through to the point of market access; however, patient surveys indicate that more can be done to improve holistic care and patient engagement. In this multidisciplinary review, we examine how clinical teams can acknowledge and embrace the individual patient's perspective, and thus improve the care for individual patients suffering from pulmonary hypertension by cultivating the importance and relevance of health-related quality of life in direct clinical care. At the individual level, patients should be provided with access to accredited specialist centres which provide a multidisciplinary approach where there is a culture focused on narrative medicine, quality of life, shared decision making and timely access to palliative care, and where there is participation in education. On a larger scale, we call for the development, expansion and promotion of patient associations to support patients and carers, lobby for access to best care and treatments, and provide input into the development of clinical trials and registries, focusing on the patients' perspective.
心肺状态的客观测量评估帮助我们改善了患者的临床预后，并通过市场准入开发了新的疗法；然而，患者调查表明，我们还可以做更多的工作来改善整体护理和患者参与度。在本次多学科综述中，我们探讨了临床团队如何承认和接受个体患者的观点，从而通过在直接临床护理中培养与健康相关的生活质量的重要性和相关性来改善肺动脉高压患者的护理。在个体层面，应向患者提供获得认可的专科中心的机会，这些中心提供多学科方法，其文化注重叙事医学、生活质量、共同决策和及时获得姑息治疗，并参与教育。在更大的范围内，我们呼吁发展、扩大和推广患者协会，以支持患者和护理人员，争取获得最佳护理和治疗的机会，并为临床试验和注册的发展提供投入，重点关注患者的观点。
