The development and validation of the King's Brief Interstitial Lung Disease (K-BILD) health status questionnaire (original) (raw)
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BMC Pulmonary Medicine, 2019
Background Health-related quality of life (HRQL) is impaired in patients with idiopathic pulmonary fibrosis (IPF). The King’s Brief Interstitial Lung Disease questionnaire (K-BILD) is a validated measure of HRQL, but no previous studies have focused on the validity of K-BILD in IPF. Moreover, the relationship between K-BILD and dyspnoea or the 6-min walk test (6MWT) has not been assessed. The aim of this study was to validate K-BILD in the largest cohort of patients with IPF to date and assess how K-BILD correlates to dyspnoea and 6MWT. Methods Firstly, K-BILD was translated into Danish using validated translation procedures. Consecutive patients with IPF were recruited. At baseline, patients completed K-BILD, the IPF-specific version of St. Georges Respiratory Questionnaire, University of California, San Diego Shortness of Breath Questionnaire (SOBQ) Short Form-36, and pulmonary function tests and 6MWT were performed. After 14 days, K-BILD and Global Rating of Change Scales were co...
Brazilian Journal of Medical and Biological Research, 2007
The objective of the present study was to determine if there is a healthrelated quality of life (HRQL) instrument, generic or specific, that better represents functional capacity dysfunction in idiopathic pulmonary fibrosis (IPF) patients. HRQL was evaluated in 20 IPF patients using generic and specific questionnaires (Medical Outcomes Short Form 36 (SF-36) and Saint George's Respiratory Questionnaire (SGRQ), respectively). Functional status was evaluated by pulmonary function tests, 6-min walking distance test (6MWDT) and dyspnea indexes (baseline dyspnea index) at rest and after exercise (modified Borg scale). There was a restrictive pattern with impairment of diffusion capacity (total lung capacity, TLC = 71.5 ± 15.6%, forced vital capacity = 70.4 ± 19.4%, and carbon monoxide diffusing capacity = 41.5 ± 16.2% of predicted value), a reduction in exercise capacity (6MWDT = 435.6 ± 95.5 m) and an increase of perceived dyspnea score at rest and during exercise (6 ± 2.5 and 7.1 ± 1.3, respectively). Both questionnaires presented correlation with some functional parameters (TLC, forced expiratory volume in 1 s and carbon monoxide diffusing capacity) and the best correlation was with TLC. Almost all of the SGRQ domains presented a strong correlation with functional status, while in SF-36 only physical function and vitality presented a good correlation with functional status. Dyspnea index at rest and 6MWDT also presented a good correlation with HRQL. Our results suggest that a specific instead of a generic questionnaire is a more appropriate instrument for HRQL evaluation in IPF patients and that TLC is the functional parameter showing best correlation with HRQL.
Respiratory Medicine, 2000
Many studies conducted on the health status and quality of life (QOL) of patients with certain chronic diseases have demonstrated that their disease had an impact on their lives. However, less is known about the QOL and health status of patients suering from idiopathic pulmonary ®brosis (IPF). In the present study, three focus groups of IPF patients (n10) were run to identify the aspects of QOL or health status that are relevant to this population and to establish which measure is preferable to assess these aspects. The patients completed and discussed the St. George's Respiratory Questionnaire (SGRQ) and the World Health Organization Quality of Life assessment instrument (WHOQOL-100). Results indicated that hobbies/leisure activities, mobility, transport, social relationships, working capacity, energy and doing things slower were aspects relevant to IPF patients' QOL. The WHOQOL-100, with an additional social support questionnaire, appeared to be preferable.
The European respiratory journal, 2017
The St George's Respiratory Questionnaire (SGRQ) has been used to measure health-related quality of life (HRQoL) in patients with idiopathic pulmonary fibrosis (IPF).This analysis evaluated the psychometric properties of the SGRQ using data from 428 patients with IPF who participated in a 12-month, randomised, placebo-controlled phase II trial of nintedanib.Internal consistency (Cronbach's α) was 0.91 for SGRQ total and >0.70 for domain scores. Test-retest reliability (intraclass correlation coefficients) was 0.77, 0.77, 0.69 and 0.66 for SGRQ total, activity, impact and symptoms scores, respectively. Construct validity of SGRQ total and domain scores was supported by weak to moderate cross-sectional correlations with the Medical Research Council dyspnoea scale (0.32-0.55), 6-min walk test distance (-0.25- -0.34), percentage predicted forced vital capacity (-0.11- -0.15) and measures of gas exchange (-0.26-0.03). There was some evidence that the SGRQ total score was sensi...
Egyptian Journal of Bronchology, 2017
Introduction Health-related quality-of-life questionnaires need to be incorporated into the evaluations of idiopathic pulmonary fibrosis (IPF) patients to assess their influence. Aim The aim of the study was to evaluate the validity of generic and specific questionnaires in assessing the severity of IPF in correlation with high-resolution computed tomography (HRCT), diffusion lung capacity for carbon monoxide (DL CO), and cardiopulmonary exercise testing (CPET). Patients and methods Forty stable IPF patients were prospectively recruited and categorized on the basis of spirometry, DL CO , HRCT, and CPET. The results were correlated with a generic International Physical Activity Questionnaire (IPAQ) and a Specific Saint George Respiratory Questionnaire (SGRQ). Results IPF patients showed restrictive pattern with impairment of diffusion capacity (forced vital capacity (FVC)= 56±14.8% and DL CO =48.5±20% of predicted value) with a total semiquantitative scoring of HRCT 16.6±8. The mean total score of the SGRQ questionnaire for all studied cases was 56.5+21 and categorical scoring of IPAQ showed that 45, 42.5, and 12.5% of patients were in moderate, severe, and mild categories, respectively. There was a negative correlation between the total score of SGRQ and VO 2 max (ml/kg/min) (maximum oxygen consumption) (r=−0.35) and VE' (l/min) (minute ventilation) (r=−0.39) on CPET, as well as with DL CO (r=−0.53), and a positive correlation with HRCT score (r=0.63). There was a highly significant correlation between IPAQ and VO 2 max (χ 2 =28), VE' (χ 2 =14.8) and desaturation percentage variables of CPET, DL CO (r=0.61), and HRCT score (r=−0.68). Conclusion Correlations between physiological parameters including DL CO and CPET, radiological parameters in the form of HRCT, and health-related quality-of-life assessment using SGRQ and IPAQ were strong and it was possible to distinguish IPF patients with severely impaired lung functions.
Respiratory Research, 2021
Rationale The University of California, San Diego Shortness of Breath Questionnaire (UCSDSOBQ) is a frequently used domain-specific dyspnea questionnaire; however, there is little information available regarding its use and minimum important difference (MID) in fibrotic interstitial lung disease (ILD). We aimed to describe the key performance characteristics of the UCSDSOBQ in this population. Methods UCSDSOBQ scores and selected anchors were measured in 1933 patients from the prospective multi-center Canadian Registry for Pulmonary Fibrosis. Anchors included the St. George’s Respiratory Questionnaire (SGRQ), European Quality of Life 5 Dimensions 5 Levels questionnaire (EQ-5D-5L) and EQ visual analogue scale (EQ-VAS), percent-predicted forced vital capacity (FVC%), diffusing capacity of the lung for carbon monoxide (DLCO%), and 6-min walk distance (6MWD). Concurrent validity, internal consistency, ceiling and floor effects, and responsiveness were assessed, followed by estimation of...
BMJ open respiratory research, 2018
We evaluated the psychometric properties of the St George's Respiratory Questionnaire (SGRQ) in patients with idiopathic pulmonary fibrosis (IPF) using data from the two INPULSIS trials. Data from 1061 patients treated with nintedanib or placebo were pooled. Internal consistency, test-retest reliability, construct validity, known-groups validity, responsiveness and responder thresholds were examined. Cronbach's α was 0.93 for SGRQ total score and >0.75 for domain scores. In patients with stable disease based on change in forced vital capacity (FVC) ≤5% predicted or 'no change' on Patient's Global Impression of Change, intraclass correlation coefficients for the SGRQ total score were 0.72 or 0.76, respectively. Moderate to strong correlations were observed between SGRQ total and domain scores and the Cough and Sputum Assessment Questionnaire cough domains (-0.34 to -0.65), University of California San Diego Shortness of Breath Questionnaire (0.56 to 0.83) and E...
Archivos de bronconeumologia, 2017
Interstitial lung disease (ILD) is associated with low exercise tolerance, dyspnea, and decreased health-related quality of life (HRQL). Idiopathic pulmonary fibrosis (IPF) is one of the most prevalent in the group. A specific version of the Saint George's questionnaire (SGRQ-I) has been developed to quantify the HRQL of IPF patients. However, this tool is not currently validated in the Spanish language. The objective was to translate into Spanish and validate the specific Saint George's Respiratory Questionnaire for idiopathic pulmonary fibrosis (SGRQ-I). The repeatability, internal consistency and construct validity of the SGRQ-I in Spanish were analyzed after a backtranslation process. In total, 23 outpatients with IPF completed the translated SGRQ-I twice, 7 days apart. Repeatability was studied, revealing good concordance in test-retest with an ICC (interclass correlation coefficient) of 0.96 (P<.001). Internal consistency was good for different questionnaire items (...
Chest, 2019
Limited data are available on the association between clinically measured disease severity markers and patient-perceived well-being in IPF. The purpose of this analysis was to examine associations between established metrics of disease severity and quality of life (QOL) in a contemporary IPF population. METHODS: We evaluated baseline data from patients enrolled in the IPF-PRO Registry between June 2014 and July 2018. The IPF-PRO Registry is a multicenter outpatient registry of patients with IPF that was diagnosed or confirmed at the enrolling center in the past 6 months. Disease severity metrics of interest included four clinical variables (forced vital capacity [FVC], diffusing capacity for carbon monoxide [DLCO], supplemental oxygen use with activity, and supplemental oxygen use at rest). We also evaluated two summary severity scores: the Gender-Age-Lung Physiology (GAP) Index, which assigns points based on gender, age, DLCO, and FVC (range: 0-7 points, with higher score indicating greater severity); and the Composite Physiologic Index (CPI), which assigns points based on DLCO, FVC, and forced expiratory volume (range w5-80, with higher values indicating greater severity). QOL was estimated from the St. George's Respiratory Questionnaire (SGRQ), an instrument designed to measure health impairment in patients with respiratory disease. We used multivariable regression models to examine associations between each continuous severity measure and SGRQ total score at baseline, adjusting for demographics, body mass index, comorbidities and per capita income. RESULTS: Among 859 patients with complete QOL data, the median SGRQ score at study enrollment was 40 (IQR¼26-53; higher scores indicate worse quality of life). Increasing disease severity was associated with worse QOL for all six metrics. Modest SGRQ impairments were observed with increasing GAP score [2.9 (1.8-4.0) per 1 point increase in GAP] and with increasing CPI values [3.0 (2.4-3.6) per 5 point increase in CPI]. QOL deficits were associated with all four clinical variables examined, with substantial SGRQ impairments observed for oxygen use with activity [15.6 (12.9-18.2)], oxygen use at rest [16.2 (13.0-19.4)], decreasing FVC (3.7 (2.9-4.4) per 10% decrease in FVC % predicted] and decreasing DLCO [5.0 (4.0-6.1) per 10% decrease in DLCO % predicted]. CONCLUSIONS: Objective measures of disease severity are associated with worse QOL in contemporary IPF patients, with associations observed for composite severity metrics, physiologic parameters and supplemental oxygen use. CLINICAL IMPLICATIONS: IPF patients with more severe disease, particularly those who use supplemental oxygen, experience meaningful deficits in QOL. Future research is needed to identify the most effective QOL interventions for IPF patients with severe disease, particularly those who require supplemental oxygen.
European Journal of Internal Medicine, 2005
Background: Idiopathic pulmonary fibrosis (IPF) has a profound impact on the functional status of patients. We sought to determine whether the health-related quality of life is affected in patients with IPF. Methods: A total of 25 patients with IPF (aged 41-72 years) and 30 healthy subjects were evaluated in a cross-sectional study. All subjects were asked to complete three dyspnea scales-the Borg (BORG), the oxygen-cost diagram (OCD) and the modified MRC questionnaire-as well as a number of health-related quality-of-life (HRQoL) questionnaires, i.e., the Saint-George Respiratory Questionnaire (SGRQ), the Quality of Well-Being (QWB) and the Hospital Anxiety and Depression Questionnaire (HAD). Pulmonary function tests, arterial blood gas measurements at rest and during exercise, chest radiographs and the duration of disease were used for correlation. Results: The mean total values of all of the scales used were near the lower best values of each scale in IPF patients and were significantly different from values in the control group. Lung volumes (FVC and TLC) correlated significantly with the SGRQ. All dyspnea scales (BORG, OCD and MRC) showed a significant correlation with diffusing capacity and blood oxygenation at rest and during exercise. The duration of the disease correlated with all dyspnea scales used and with the SGRQ and HAD Questionnaires. Conclusions: Our results suggest that dyspnea scales and the SGRQ are sensitive tools for assessing health-related quality of life in patients with IPF. D