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特发性肺纤维化患者的健康相关生活质量:我们现在处于什么位置?

Health-related quality of life in idiopathic pulmonary fibrosis: where are we now?

机构信息

Autoimmune Lung Center and Interstitial Lung Disease Program, National Jewish Health, Denver, CO 80206, USA.

出版信息

Curr Opin Pulm Med. 2013 Sep;19(5):474-9. doi: 10.1097/MCP.0b013e328363f479.

DOI:10.1097/MCP.0b013e328363f479
PMID:23851327
Abstract

PURPOSE OF REVIEW

To summarize current knowledge of health-related quality of life (HRQL) assessment in idiopathic pulmonary fibrosis (IPF), with an emphasis on reviewing available data on HRQL instruments, operationalizing HRQL assessment in IPF research and interventions that show promise for improving HRQL in patients with IPF.

RECENT FINDINGS

Findings from several studies support the validity of the Medical Outcomes Study Short-Form 36-item Questionnaire and St George's Respiratory Questionnaire for assessing HRQL in IPF. IPF-specific HRQL instruments are in development, but additional research is needed before their broad implementation. Pulmonary rehabilitation and IPF disease management programs appear to be promising interventions for improving HRQL in IPF patients.

SUMMARY

IPF is a devastating disease. Because there is no cure, an improved understanding of how this disease affects patients' lives is needed. Rigorously developed and carefully administered instruments are needed to assess those effects and to measure the impact of interventions aimed at improving the lives of patients with IPF.

摘要

目的综述

总结特发性肺纤维化(IPF)患者健康相关生活质量(HRQL)评估的现有知识,重点回顾 IPF 患者 HRQL 评估的相关工具,以及在 HRQL 评估和改善 IPF 患者 HRQL 的干预措施方面的应用。

最新发现

多项研究结果支持健康调查简表 36 项问卷和圣乔治呼吸问卷在 IPF 患者 HRQL 评估中的有效性。正在开发特定于 IPF 的 HRQL 工具,但在广泛应用之前还需要进一步的研究。肺康复和 IPF 疾病管理计划似乎是改善 IPF 患者 HRQL 的有前途的干预措施。

总结

特发性肺纤维化是一种破坏性疾病。由于目前尚无治愈方法,因此需要更深入地了解这种疾病如何影响患者的生活。需要开发严格的工具并谨慎地进行管理,以评估这些影响,并衡量旨在改善 IPF 患者生活的干预措施的影响。

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