Abstract
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.
Abstract
Improving patient quality of life and functional status is an important aim of research and development in ILDs with a progressive phenotype. Measures of patients' perceptions and patient-reported outcomes will be required to understand our interventions. http://ow.ly/neQu30mCS89
Footnotes
Provenance: Publication of this peer-reviewed article was sponsored by Boehringer Ingelheim Pharmaceuticals Inc, Ridgefield, CT, USA (principal sponsor, European Respiratory Review issue 150).
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.
Support statement: The authors received no direct compensation related to the development of the manuscript. Writing assistance was contracted and funded by Boehringer Ingelheim Pharmaceuticals, Inc. (BIPI).
- Received August 15, 2018.
- Accepted November 7, 2018.
- Copyright ©ERS 2018.
ERR articles are open access and distributed under the terms of the Creative Commons Attribution Non-Commercial Licence 4.0.