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

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Eur Respir Rev


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.

Medical Subject Headings

Activities of Daily Living; Cost of Illness; Disease Progression; Health Knowledge, Attitudes, Practice; Humans; Lung; Lung Diseases, Interstitial; Patient Reported Outcome Measures; Patients; Phenotype; Pulmonary Fibrosis; Quality of Life; Recovery of Function; Severity of Illness Index; Time Factors; Treatment Outcome

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