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

Abstract

@ERSpublications 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 patientreported outcomes will be required to understand our interventions. http://ow.ly/neQu30mCS89 Cite this article as: Swigris JJ, Brown KK, Abdulqawi R, et al. Patients' perceptions and patient-reported outcomes in progressive-fibrosing interstitial lung diseases. Eur Respir Rev 2018; 27: 180075 [https://doi.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 reliablyeffective, 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.

Severe Fatigue is Highly Prevalent in Patients with IPF or Sarcoidosis

“…Patients with interstitial lung disease (ILD) experience common and distressing respiratory symptoms, e.g., dyspnea on exertion and a cough [1,2]. Moreover, fatigue, which is defined as the subjective feeling of tiredness or exhaustion [3], is assumed to be present and affects ILD patients' quality of life (QoL) significantly [4][5][6].…”

“…Fatigue is significantly associated with a patient's health status, reduced physical condition, and functional impairments, irrespective of the degree of lung function impairment [4,[10][11][12]. Fatigue may be affiliated by dyspnea [13,14], daytime sleepiness [14,15] (characterized by difficulty staying awake and alert during the day) [16], symptoms of anxiety and/or depression, and fatigue-related catastrophizing [4,7]. Fatigue might be an adverse event of systemic medication used to treat ILD [17,18].…”

Treatment of progressive fibrosing interstitial lung diseases: a milestone in the management of interstitial lung diseases

“…They should be commended for such an insightful, state-of-the-art review. The concept of PF-ILDs was developed in a recent issue of the European Respiratory Review [6][7][8][9][10][11][12][13].…”

The Burden of Progressive Fibrosing Interstitial Lung Disease: A DELPHI Approach

“…The socioeconomic burden of IPF is considerable. IPF has a significant impact on daily functioning and patients' quality of life [11,12] and represents a substantial burden on the healthcare system [13]. Similarly, non-IPF progressive fibrosing ILD impairs patients' quality of life and, because of its resemblance in pathogenesis, is expected to increase the use of healthcare resources and costs in a comparable way [12,14].…”