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

Document Type

Article

Publication Date

12-31-2018

Publication Title

Eur Respir Rev

Keywords

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

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.

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

PubMed ID

30578334

Volume

27

Issue

150

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