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肺动脉高压患者的观点。

The PAH patient's perspective.

作者信息

Jeffery Daniel A, Gin-Sing Wendy, Bedair Radwa, Howard Luke S

机构信息

Morriston Cardiac Centre, Swansea Bay University Healthboard, Swansea, SA6 6NL, UK.

National Pulmonary Hypertension Service, Hammersmith Hospital, Imperial College Healthcare Trust, London, W12 0HS, UK.

出版信息

Int J Cardiol Congenit Heart Dis. 2025 May 26;21:100596. doi: 10.1016/j.ijcchd.2025.100596. eCollection 2025 Sep.

Abstract

Pulmonary Hypertension is a serious condition which can occur in adults living with congenital heart disease. Due to advances in the care of patients with congenital heart disease, patients are living longer with the condition. Unfortunately, patients living with Pulmonary Arterial Hypertension associated with Congenital Heart Disease (PAH-CHD) face a number of different issues directly related to their condition, which range from physical limitations and uncertainty over their diagnosis, which in some cases cause significant depression and anxiety, to impact on their relationships with friends and family, financial challenges and family planning. In this article, we interview two patients living with PAH-CHD and discuss the numerous issues that patients may face as a direct result of their condition.

摘要

肺动脉高压是一种严重的病症,可能发生在患有先天性心脏病的成年人身上。由于先天性心脏病患者护理方面的进展,患者在患有这种疾病的情况下寿命更长。不幸的是,患有与先天性心脏病相关的肺动脉高压(PAH-CHD)的患者面临许多与其病情直接相关的不同问题,这些问题从身体限制和诊断的不确定性(在某些情况下会导致严重的抑郁和焦虑)到对他们与朋友和家人关系的影响、经济挑战以及计划生育等。在本文中,我们采访了两位患有PAH-CHD的患者,并讨论了患者因其病情可能直接面临的众多问题。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/6df7/12178787/0f52b7c45c5f/fx1.jpg

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