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Eur Respir Rev. 2018 Dec 21;27(150). pii: 180075. doi: 10.1183/16000617.0075-2018. Print 2018 Dec 31.

Patients' perceptions and patient-reported outcomes in progressive-fibrosing interstitial lung diseases.

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Interstitial Lung Disease Program, National Jewish Health, Denver, CO, USA.
Both authors contributed equally.
Manchester University NHS Foundation Trust, Manchester, UK.
Division of Infection, Immunity and Respiratory Medicine, School of Biological Sciences, Faculty of Biology, Medicine and Health, University of Manchester, Manchester, UK.
Dept of Internal Medicine, Pulmonary and Critical Care Medicine, University of Kentucky, Lexington, KY, USA.
Division of Pulmonary and Critical Care, Loyola University Chicago Stritch School of Medicine, Maywood, IL, USA.
Dept of Pulmonary Diseases, Fachkrankenhaus Coswig, Centre for Pulmonary Diseases and Thoracic Surgery, Coswig, Germany.
Dept of Internal Medicine, Pulmonary and Critical Care Medicine, Henry Ford Hospital, Detroit, MI, USA.
Dept of Medicine, University of Minnesota, Minneapolis, MN, USA.
Clinical Research Center, National Hospital Organization Kinki-Chuo Chest Medical Center, Osaka, Japan.


The effects of interstitial lung disease (ILD) create a significant burden on patients, unsettling almost every domain of their lives, disrupting their physical and emotional well-being and impairing their quality of life (QoL). Because many ILDs are incurable, and there are limited reliably-effective, life-prolonging treatment options available, the focus of many therapeutic interventions has been on improving or maintaining how patients with ILD feel and function, and by extension, their QoL. Such patient-centred outcomes are best assessed by patients themselves through tools that capture their perceptions, which inherently incorporate their values and judgements. These patient-reported outcome measures (PROs) can be used to assess an array of constructs affected by a disease or the interventions implemented to treat it. Here, we review the impact of ILD that may present with a progressive-fibrosing phenotype on patients' lives and examine how PROs have been used to measure that impact and the effectiveness of therapeutic interventions.

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Conflict of interest statement

Conflict of interest: J.J. Swigris has nothing to disclose. Conflict of interest: K.K. Brown reports grants from NHLBI (multiple lung fibrosis grants), personal fees from Astra Zeneca, Biogen, Galecto, MedImmune, Novartis, Aeolus, ProMetic, Patara, Third Pole, aTyr, Galapagos and Boehringer Ingelheim, other from Roche/Genentech (submitted grant), and conversations under CDA only with Genoa and Global Blood Therapeutics, outside the submitted work. Conflict of interest: R. Abdulqawi has nothing to disclose. Conflict of interest: K. Buch reports grants from Boehringer-Ingelheim (site PI for multicentre PF-ILD study), outside the submitted work. Conflict of interest: D.F. Dilling reports personal fees from Boehringer Ingelheim Pharmaceuticals, Inc. (speaking fees and advisory board) and Genentech (speaking fees and advisory board), and grants for research support from Boehringer Ingelheim Pharmaceuticals, Inc., Genentech, Gilead and Fibrogen, outside the submitted work. Conflict of interest: D. Koschel reports personal fees and other from Roche (consultancy or speaker fees), Boehringer (consultancy or speaker fees) and Sanofi (consultancy or speaker fees), outside the submitted work. Conflict of interest: K. Thavarajah has nothing to disclose. Conflict of interest: R. Tomic reports grants and personal fees from Boehringer Ingelheim, and personal fees from Genentech, outside the submitted work. Conflict of interest: Y. Inoue reports other from Boehringer Ingelheim (member of the steering committee of a clinical trial and lecture fee), during the conduct of the study; grants from Japanese Ministry of Health, Labour, and Welfare (research grant for ILDs), other from Shionogi (advisory board of clinical trial and lecture fee) and other from AsahiKasei (advisory board of clinical trial), outside the submitted work.

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