Abstract

BackgroundHealth-related quality of life (HRQL) in interstitial lung disease (ILD) patients is impaired. We aimed to identify baseline predictors for HRQL decline within a 12-month observation period.MethodsWe analyzed 194 ILD patients from two German ILD-centers in the observational HILDA study. We employed the disease-specific King’s Brief Interstitial Lung Disease questionnaire (K-BILD) with the subdomains ‘psychological impact’, ‘chest symptoms’ and ‘breathlessness and activities’, and the generic EQ-5D Visual Analog Scale (VAS). We evaluated how many patients experienced a clinically meaningful decline in HRQL. Subsequently, we investigated medical and sociodemographic factors as potential predictors of HRQL deterioration.ResultsWithin the study population (34.0% male, Ø age 61.7) mean HRQL scores hardly changed between baseline and follow up (K-BILD: 52.8 vs. 52.5 | VAS: 60.0 vs. 57.3). On the intra-individual level, 30.4% (n = 59) experienced a clinically relevant deterioration in K-BILD total score and 35.4% (n = 68) in VAS. Lower baseline forced vital capacity (FVC) % predicted determined HRQL decline in K-BILD total score (ß-coefficient: − 0.02, p = 0.007), VAS (ß-coefficient: − 0.03, p < 0.0001), and in the subdomain ‘psychological impact’ (ß-coefficient: − 0.02, p = 0.014). Lower baseline diffusing capacity of carbon monoxide (DLCO) % predicted determined deterioration in ‘breathlessness and activities’ (ß-coefficient: − 0.04, p = 0.003) and ‘chest symptoms’ (ß-coefficient: − 0.04, p = 0.002). Additionally, increasing age predicted decline in ‘psychological impact’ (ß-coefficient: 0.06, p < 0.007).ConclusionAround a third of ILD patients experienced a clinically relevant HRQL deterioration in a 12-month period, which was associated with baseline lung function values in all K-BILD domains. As lung function values are time-dependent variables with possible improvements, in contrast to age and ILD subtype, it, thus, seems important to improve lung function and prevent its decline in order to maintain HRQL on the possibly highest level.

Highlights

  • Health-related quality of life (HRQL) in interstitial lung disease (ILD) patients is impaired

  • Disease-specific questionnaires such as the King’s Brief Interstitial Lung Disease questionnaire (K-BILD), evaluate health status in a wide range of ILDs and assess HRQL in measures that are relevant to ILD

  • Covariates We considered possible baseline predictors, such as lung function parameters, diffusing capacity of carbon monoxide (DLCO) % predicted and forced vital capacity (FVC) % predicted, age, sex, disease duration, smoking status, school education, employment status and ILD subtypes (IPF, sarcoidosis and other ILD subtypes)

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Summary

Introduction

Health-related quality of life (HRQL) in interstitial lung disease (ILD) patients is impaired. Interstitial lung diseases (ILD) are a group of heterogeneous, rare diseases, which are characterized by pulmonary fibrosis and/or inflammation [1, 2]. It is known that HRQL is impaired in IPF [10] and associated with decline in lung function parameters [11, 12]. Predictors for HRQL decline over time are still sparsely investigated, and studies that investigated HRQL used instruments that are mainly not specific to ILD. Disease-specific questionnaires such as the King’s Brief Interstitial Lung Disease questionnaire (K-BILD), evaluate health status in a wide range of ILDs and assess HRQL in measures that are relevant to ILD. It has been shown that these two domains correlate with lung function [13, 14]

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