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本文引用的文献

1
[Linguistic Validation of the "German Lung Fibrosis Health Related Quality of Life Questionnaire"].["德国肺纤维化健康相关生活质量问卷的语言验证"]
Pneumologie. 2021 Oct;75(10):753-760. doi: 10.1055/a-1334-2745. Epub 2021 Aug 24.
2
Development and Initial Validation Analyses of the Living with Idiopathic Pulmonary Fibrosis Questionnaire.特发性肺纤维化生活质量问卷的编制与初步验证分析。
Am J Respir Crit Care Med. 2020 Dec 15;202(12):1689-1697. doi: 10.1164/rccm.202002-0415OC.
3
Survival and course of lung function in the presence or absence of antifibrotic treatment in patients with idiopathic pulmonary fibrosis: long-term results of the INSIGHTS-IPF registry.特发性肺纤维化患者接受或未接受抗纤维化治疗时的生存情况及肺功能变化过程:INSIGHTS-IPF注册研究的长期结果
Eur Respir J. 2020 Aug 13;56(2). doi: 10.1183/13993003.02279-2019. Print 2020 Aug.
4
The therapy of idiopathic pulmonary fibrosis: what is next?特发性肺纤维化的治疗:下一步是什么?
Eur Respir Rev. 2019 Sep 4;28(153). doi: 10.1183/16000617.0021-2019. Print 2019 Sep 30.
5
The clinical course of idiopathic pulmonary fibrosis and its association to quality of life over time: longitudinal data from the INSIGHTS-IPF registry.特发性肺纤维化的临床病程及其与生活质量随时间的关系:来自 INSIGHTS-IPF 登记处的纵向数据。
Respir Res. 2019 Mar 15;20(1):59. doi: 10.1186/s12931-019-1020-3.
6
Psychometric properties and minimal important differences of SF-36 in Idiopathic Pulmonary Fibrosis.特发性肺纤维化患者健康调查 36 量表的心理计量学特性和最小重要差异。
Respir Res. 2019 Mar 1;20(1):47. doi: 10.1186/s12931-019-1010-5.
7
Psychometric properties of the St George's Respiratory Questionnaire in patients with idiopathic pulmonary fibrosis: insights from the INPULSIS trials.圣乔治呼吸问卷在特发性肺纤维化患者中的心理测量学特性:来自INPULSIS试验的见解。
BMJ Open Respir Res. 2018 May 18;5(1):e000278. doi: 10.1136/bmjresp-2018-000278. eCollection 2018.
8
[DGP Interstitial Lung Disease Patient Questionnaire].[弥漫性泛细支气管炎间质性肺疾病患者问卷]
Pneumologie. 2018 Jun;72(6):446-457. doi: 10.1055/s-0044-100207. Epub 2018 Feb 21.
9
Prognosis and longitudinal changes of physical activity in idiopathic pulmonary fibrosis.特发性肺纤维化患者的预后和体力活动的纵向变化。
BMC Pulm Med. 2017 Jul 25;17(1):104. doi: 10.1186/s12890-017-0444-0.
10
Health related quality of life in patients with idiopathic pulmonary fibrosis in clinical practice: insights-IPF registry.临床实践中特发性肺纤维化患者的健康相关生活质量:洞察-特发性肺纤维化登记研究。
Respir Res. 2017 Jul 14;18(1):139. doi: 10.1186/s12931-017-0621-y.

一种用于评估特发性肺纤维化或非特异性间质性肺炎患者生活质量的新工具。

A New Tool to Assess Quality of Life in Patients with Idiopathic Pulmonary Fibrosis or Non-specific Interstitial Pneumonia.

机构信息

LungenClinic, Großhansdorf.

Zentrum für Klinische Psychologie und Rehabilitation der Universität Bremen.

出版信息

Pneumologie. 2022 Jan;76(1):25-34. doi: 10.1055/a-1579-7618. Epub 2021 Sep 14.

DOI:10.1055/a-1579-7618
PMID:34521147
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC8789482/
Abstract

BACKGROUND

Quality of life (QoL) is significantly impaired in patients with pulmonary fibrosis, however reliable tools to assess QoL issues specific for this group of patients are still missing. We thus aimed to develop a new questionnaire called "Quality of life in patients with idiopathic pulmonary fibrosis" (QPF) to measure QoL in patients with fibrotic idiopathic interstitial pneumonias (IIP).

METHODS

An item pool was created on the basis of a German expert group with support of patients suffering from pulmonary fibrosis. In a 1st step, this version of the questionnaire was completed by 52 patients with idiopathic pulmonary fibrosis (IPF) or non-specific interstitial pneumonia (NSIP). Following this, an item- and an exploratory factor analysis was carried out and a 2nd version created. In a multicenter validation study in a one-group pre-post design, the questionnaire was filled in by 200 patients with IIP (IPF = 190, iNSIP = 10) at 2 time points with an interval of 6 months. Cross-validation was carried out with the St. Georges Respiratory Questionnaire (SGRQ).

RESULTS

The mean age of the patients was 71.0 years (50-90 years), 82.5 % were male. Item analysis revealed that most of Cronbach alpha and selectivity values of QPF-scales could be considered as sufficient (e. g. QPF-scale "condition" [alpha = 0.827], "impairment" [alpha = 0.882]). At scale level, there were significant differences in terms of a deterioration or improvement in the QPF-condition and QPF-breathlessness scales and also in the SGRQ-activity scale. Analysis of construct validation of QPF and SGRQ showed moderate correlations between both questionnaires. A deterioration in health status from the patient's and doctor's perspective was seen in the scales "impairment", "shortness of breath" and "health status" of the QPF. The QPF was able to detect a change in the patient's mood ("condition" scale) in the course of treatment.

CONCLUSION

This newly developed questionnaire maps the special needs of the patients well. The QPF is suitable for screening of quality of life as well as for supplementing the medical history and for monitoring the course of disease in fibrotic IIPs.

摘要

背景

肺纤维化患者的生活质量(QoL)显著受损,但仍缺乏专门针对这组患者的 QoL 评估工具。因此,我们旨在开发一种名为“特发性肺纤维化患者生活质量”(QPF)的新问卷,以测量纤维化特发性间质性肺疾病(IIP)患者的生活质量。

方法

在德国专家组的支持下,基于患者的意见,创建了一个项目池。在第 1 步中,52 名特发性肺纤维化(IPF)或非特异性间质性肺炎(NSIP)患者填写了该问卷的初始版本。在此基础上,进行了项目和探索性因素分析,并创建了第 2 个版本。在一项多中心验证研究中,采用单组前后设计,200 名 IIP 患者(IPF=190,iNSIP=10)在 6 个月的间隔内分两次填写问卷。采用圣乔治呼吸问卷(SGRQ)进行交叉验证。

结果

患者的平均年龄为 71.0 岁(50-90 岁),82.5%为男性。项目分析显示,QPF 量表的大多数 Cronbach alpha 和选择性值可被认为是足够的(例如,QPF 量表“条件”[alpha=0.827],“损害”[alpha=0.882])。在量表水平上,QPF 条件和 QPF 呼吸困难量表以及 SGRQ 活动量表的恶化或改善方面存在显著差异。QPF 和 SGRQ 的结构验证分析显示,两个问卷之间存在中度相关性。从患者和医生的角度来看,QPF 的“损害”、“呼吸困难”和“健康状况”等量表的健康状况恶化。QPF 能够在治疗过程中检测到患者情绪的变化(“条件”量表)。

结论

新开发的问卷很好地满足了患者的特殊需求。QPF 适用于纤维化 IIP 患者的生活质量筛查,也可用于补充病史和监测疾病进程。