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

• Published in: European respiratory review Vol. 27; no. 150; p. 180075
• Main Authors: Swigris, Jeffrey J, Brown, Kevin K, Abdulqawi, Rayid, Buch, Ketan, Dilling, Daniel F, Koschel, Dirk, Thavarajah, Krishna, Tomic, Rade, Inoue, Yoshikazu
• Format: Journal Article
• Language: English
• Published: England European Respiratory Society 31.12.2018
• Subjects: Activities of Daily Living; Cost of Illness; Disease Progression; Health Knowledge, Attitudes, Practice; Humans; Lung - physiopathology; Lung Diseases, Interstitial - diagnosis; Lung Diseases, Interstitial - physiopathology; Lung Diseases, Interstitial - psychology; Lung Diseases, Interstitial - therapy; Patient Reported Outcome Measures; Patients - psychology; Phenotype; Pulmonary Fibrosis - diagnosis; Pulmonary Fibrosis - physiopathology; Pulmonary Fibrosis - psychology; Pulmonary Fibrosis - therapy; Quality of Life; Recovery of Function; Review; Severity of Illness Index; Time Factors; Treatment Outcome
• ISSN: 0905-9180; 1600-0617
• DOI: 10.1183/16000617.0075-2018

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.