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弥漫性间质性肺病的姑息治疗:一项西班牙调查的结果

Palliative Care in Diffuse Interstitial Lund Disease: Results of a Spanish Survey.

作者信息

Barril Silvia, Alonso Ana, Rodríguez-Portal José Antonio, Viladot Margarita, Giner Jordi, Aparicio Francisco, Romero-Ortiz Ana, Acosta Orlando, Castillo Diego

机构信息

Servicio de Neumología, Hospital Universitari Arnau de Vilanova, Lleida, España; Unidad Multidisciplinar de EPID, Servicio de Neumología, Hospital de la Santa Creu i Sant Pau, Barcelona, España.

Unidad Multidisciplinar de EPID, Servicio de Neumología, Hospital de la Santa Creu i Sant Pau, Barcelona, España.

出版信息

Arch Bronconeumol (Engl Ed). 2018 Mar;54(3):123-127. doi: 10.1016/j.arbres.2017.08.007. Epub 2017 Nov 8.

Abstract

INTRODUCTION

Interstitial lung diseases (ILD) and, in particular, idiopathic pulmonary fibrosis, may have a significant impact on patient survival. Recent studies highlight the need for palliative care (PC) in the management of ILD patients. The aim of this study was to determine the current situation of PC in patients in Spain.

METHODS

A 36-question survey addressing the main aspects of PC in ILD patients was designed. The survey was sent via email to all members of the Spanish Society of Pulmonology and Thoracic Surgery. Participation was voluntary.

RESULTS

One hundred and sixty-four participants responded to the survey. Ninety-eight percent said they were interested in PC, 46% had received specific training, and 44% reported being responsible for PC in their ILD patients. Symptom control and end-of-life stage were the most frequent reasons for referral to PC teams. Regarding end-of-life, 78% reported consensual agreement with patients on the limitation of therapeutic efforts, 35% helped prepare an end-of-life advance directive, and 22% agreed on the place of death.

CONCLUSION

Despite the well-known need for PC in patients with ILD and the notable interest of the survey participants in this subject, there are clear formative and organizational gaps that should be addressed to improve care in this area in ILD patients in Spain.

摘要

引言

间质性肺疾病(ILD),尤其是特发性肺纤维化,可能对患者生存产生重大影响。最近的研究强调了在ILD患者管理中姑息治疗(PC)的必要性。本研究的目的是确定西班牙患者的PC现状。

方法

设计了一项包含36个问题的调查问卷,涉及ILD患者PC的主要方面。该问卷通过电子邮件发送给西班牙肺科和胸外科协会的所有成员。参与是自愿的。

结果

164名参与者回复了调查问卷。98%的人表示对PC感兴趣,46%的人接受过特定培训,44%的人报告负责其ILD患者的PC。症状控制和临终阶段是转诊至PC团队最常见的原因。关于临终情况,78%的人报告与患者就限制治疗努力达成了共识,35%的人帮助准备了临终预嘱,22%的人就死亡地点达成了一致。

结论

尽管ILD患者对PC的需求众所周知,且调查参与者对该主题表现出显著兴趣,但仍存在明显的培训和组织差距,应加以解决,以改善西班牙ILD患者在这一领域的护理。

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