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.
Digital Object Identifier (DOI)
Swigris, Jeffrey J.; Brown, Kevin K.; Abdulqawi, Rayid; Buch, Ketan; Dilling, Daniel F.; Koschel, Dirk; Thavarajah, Krishna; Tomic, Rade; and Inoue, Yoshikazu, "Patients' Perceptions and Patient-Reported Outcomes in Progressive-Fibrosing Interstitial Lung Diseases" (2018). Internal Medicine Faculty Publications. 198.