CC BY-NC-ND 4.0 · Pneumologie 2022; 76(01): 25-34
DOI: 10.1055/a-1579-7618
Original Paper

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

Ein neuer Fragebogen zur Kennzeichnung der Lebensqualität bei Patienten mit idiopathischer Lungenfibrose und idiopathischer nicht-spezifischer interstitieller Lungenfibrose
Detlef Kirsten
1   LungenClinic, Großhansdorf
,
Ulrike de Vries
2   Zentrum für Klinische Psychologie und Rehabilitation der Universität Bremen
,
Ulrich Costabel
3   Klinik für Pneumologie, Ruhrlandklinik, Universitätsmedizin Essen
,
Dirk Koschel
4   Fachkrankenhaus Coswig
,
Francesco Bonella
3   Klinik für Pneumologie, Ruhrlandklinik, Universitätsmedizin Essen
,
Andreas Günther
5   Fachkrankenhaus Waldhof Elgershausen
,
Jürgen Behr
6   Department of Internal Medicine V, LMU Klinikum, University of Munich and German Center for Lung Research
,
Martin Claussen
1   LungenClinic, Großhansdorf
,
Stefan Schwarz
7   Asklepios Klinikum Harburg, Lungen-Abteilung
,
Antje Prasse
8   Medizinische Hochschule Hannover, Klinik für Pneumologie; Pneumologie und Beatmungsmedizin
,
Michael Kreuter
9   Center for interstitial and rare lung diseases, Pneumology, Thoraxklinik, University of Heidelberg and German Center for Lung ResearchHeidelberg, Germany
› Author Affiliations

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 doctorʼs 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 patientʼs 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.

Zusammenfassung

Hintergrund Die Lebensqualität (QoL) ist bei Patienten mit Lungenfibrose erheblich vermindert. Messinstrumente der QoL für diese spezielle Patientengruppe sind bislang nicht in ausreichender Art und Weise vorhanden. Deshalb entwickelten wir einen spezifischen Fragebogen bei Patienten mit Idiopathischer Lungenfibrose (IPF) und Nicht-spezifischer Lungenfibrose (NSIP).

Methoden Ein Fragenkatalog wurde von einer Expertengruppe der Deutschen Gesellschaft für Pneumologie für Patienten mit Idiopatischer Lungenfibrose und Nicht-spezifischer Lungenfibrose zusammengestellt. In einem ersten Schritt wurden diese Fragen an 52 Patienten dieser Krankheitsentitäten getestet und einer Item- und explorativen Faktor-Analyse unterzogen und anschließend so eine zweite Version des Fragenkatalogs erstellt und mit Patienten dieser Krankheitsentitäten diskutiert und evaluiert.

In einer multizentrischen Studie an 200 Patienten (IPF 190, NSIP 10) wurde der Fragebogen in einem Pre-post-Design zweizeitig in einem Abstand von 6 Monaten getestet. Ein Vergleich mit dem eingeführten St. Georges Respiratory Questionaire (SGRQ) wurde zeitgleich durchgeführt.

Ergebnisse Das mittlere Alter der Patienten betrug 71,0 Jahre (50–90 Jahre). Die Itemanalyse erfolgte mittels Cronbachʼs alpha und Werte für Befindlichkeit (alpha = 0.827) sowie Beinträchtigungen (alpha = 0.882) wurden als statistisch ausreichend angesehen.

Es wurden signifikante Änderungen in Bezug auf Verschlechterungen oder Verbesserungen in den Fragen zur „Befindlichkeit“ und „Atemnot“ und auch in der Skala „Aktivität“ gefunden.

Der Vergleich mit dem SGRQ zeigte eine moderate Übereinstimmung beider Fragebögen. Eine Verschlechterung des Gesundheitsstatus aus der Patientenperspektive sowie aus der ärztlichen Perspektive wurde bei den Skalen „Beeinträchtigungen“, „Atemnot“ und „allgemeiner Gesundheitsstatus“ analysiert.

Der Fragebogen zur Lebensqualität bei Patienten mit Idiopathischer Lungenfibrose und Nicht-spezifischer Lungenfibrose ist in der Lage, Änderungen der Lebensqualität im Verlauf der Erkrankung zu erkennen.

* In memory to Prof. Dr. Franz Petermann, Bremen. He has accompanied this project until his early death in August 2019.


Supplementary material



Publication History

Article published online:
14 September 2021

© 2021. The Author(s). This is an open access article published by Thieme under the terms of the Creative Commons Attribution-NonDerivative-NonCommercial License, permitting copying and reproduction so long as the original work is given appropriate credit. Contents may not be used for commecial purposes, or adapted, remixed, transformed or built upon. (https://creativecommons.org/licenses/by-nc-nd/4.0/)

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