Patients' perceptions and patient-reported outcomes in progressive-fibrosing interstitial lung diseases. (21st December 2018)

• Record Type: Journal Article
• Authors: Swigris, Jeffrey J.; Brown, Kevin K.; Abdulqawi, Rayid; Buch, Ketan; Dilling, Daniel F.; Koschel, Dirk; Thavarajah, Krishna; Tomic, Rade; Inoue, Yoshikazu
• Is Part Of: European respiratory review. Volume 27:Number 150(2018)
• Publication Date: 2018-12-21
• Subjects: Respiratory organs -- Diseases -- Periodicals; Respiratory Tract Diseases; Respiratory organs -- Diseases; Respiratory organs -- Diseases -- Treatment; Electronic journals; Periodical; Periodicals; Periodicals; 616.2
• DOI: 10.1183/16000617.0075-2018
• Languages: English
• ISSNs: 0905-9180

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. 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