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Psychometric Validation of the German Translation of the Quality of Life Questionnaire-Bronchiectasis (QOL-B)-Data from the German Bronchiectasis Registry PROGNOSIS.

ABSTRACT: Patients with bronchiectasis feature considerable symptom burden and reduced health-related quality of life (QOL). We provide the psychometric validation of the German translation of the disease-specific Quality of Life Questionnaire-Bronchiectasis (QOL-B), version 3.1, using baseline data of adults consecutively enrolled into the prospective German bronchiectasis registry PROGNOSIS. Overall, 904 patients with evaluable QOL-B scores were included. We observed no relevant floor or ceiling effects. Internal consistency was good to excellent (Cronbach's α ≥0.73 for each scale). QOL-B scales discriminated between patients based on prior pulmonary exacerbations and hospitalizations, breathlessness, bronchiectasis severity index, lung function, sputum volume, Pseudomonas aeruginosa status and the need for regular pharmacotherapy, except for Social Functioning, Vitality and Emotional Functioning scales. We observed moderate to strong convergence between several measures of disease severity and QOL-B scales, except for Social and Emotional Functioning. Two-week test-retest reliability was good, with intraclass correlation coefficients ≥0.84 for each scale. Minimal clinical important difference ranged between 8.5 for the Respiratory Symptoms and 14.1 points for the Social Functioning scale. Overall, the German translation of the QOL-B, version 3.1, has good validity and test-retest reliability among a nationally representative adult bronchiectasis cohort. However, responsiveness of QOL-B scales require further investigation during registry follow-up.

SUBMITTER: Quellhorst L

PROVIDER: S-EPMC8781204 | biostudies-literature | 2022 Jan

REPOSITORIES: biostudies-literature

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Psychometric Validation of the German Translation of the Quality of Life Questionnaire-Bronchiectasis (QOL-B)-Data from the German Bronchiectasis Registry PROGNOSIS.

Quellhorst Laura L Barten-Neiner Grit G de Roux Andrés A Diel Roland R Mertsch Pontus P Pink Isabell I Rademacher Jessica J Sutharsan Sivagurunathan S Welte Tobias T Zurawski Annegret A Ringshausen Felix C FC On Behalf Of The Prognosis Study Group

Journal of clinical medicine 20220115 2

Patients with bronchiectasis feature considerable symptom burden and reduced health-related quality of life (QOL). We provide the psychometric validation of the German translation of the disease-specific Quality of Life Questionnaire-Bronchiectasis (QOL-B), version 3.1, using baseline data of adults consecutively enrolled into the prospective German bronchiectasis registry PROGNOSIS. Overall, 904 patients with evaluable QOL-B scores were included. We observed no relevant floor or ceiling effects ...[more]

PMID: 35054135

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Project description:BackgroundPrimary ciliary dyskinesia (PCD) is a rare genetic disorder caused by the malfunction of motile cilia and a specific etiology of adult bronchiectasis of unknown prevalence. A better understanding of the clinical phenotype of adults with PCD is needed to identify individuals for referral to diagnostic testing.Research questionWhat is the frequency of PCD among adults with bronchiectasis; how do people with PCD differ from those with other etiologies; and which clinical characteristics are independently associated with PCD?Study design and methodsWe investigated the proportion of PCD among the participants of the Prospective German Non-CF-Bronchiectasis Registry (PROGNOSIS) study; applied multiple imputation to account for missing data in 64 (FEV1), 58 (breathlessness), 26 (pulmonary exacerbations), and two patients (BMI), respectively; and identified predictive variables from baseline data using multivariate logistic regression analysis.ResultsWe consecutively recruited 1,000 patients from 38 centers across all levels of the German health care system. Overall, PCD was the fifth most common etiology of bronchiectasis in 87 patients (9%) after idiopathic, postinfective, COPD, and asthma. People with PCD showed a distinct clinical phenotype. In multivariate regression analysis, the chance of PCD being the etiology of bronchiectasis increased with the presence of upper airway disease (chronic rhinosinusitis and/or nasal polyps; adjusted OR [aOR], 6.3; 95% CI, 3.3-11.9; P < .001), age < 53 years (aOR, 5.3; 95% CI, 2.7-10.4; P < .001), radiologic involvement of any middle and lower lobe (aOR, 3.7; 95% CI, 1.3-10.8; P = .016), duration of bronchiectasis > 15 years (aOR, 3.6; 95% CI, 1.9-6.9; P < .001), and a history of Pseudomonas aeruginosa isolation from respiratory specimen (aOR, 2.4; 95% CI, 1.3-4.5; P = .007).InterpretationWithin our nationally representative cohort, PCD was a common etiology of bronchiectasis. We identified few easy-to-assess phenotypic features, which may promote awareness for PCD among adults with bronchiectasis.Clinical trial registrationClinicalTrials.gov; No.: NCT02574143; URL: www.Clinicaltrialsgov.

Project description:BackgroundTo evaluate the psychometric characteristics of the 1-month recall Uterine Fibroid Symptom and Health-Related Quality of Life questionnaire (UFS-QOL), including the Revised Activities subscale.MethodsVENUS I and II were phase III, randomized, double-blind, placebo-controlled trials of ulipristal acetate in women with uterine fibroids (UF) and abnormal uterine bleeding. Women completed the 1-month recall UFS-QOL at baseline and after 12 weeks' treatment. Uterine bleeding was assessed via a daily diary (both studies); the Patient Global Impression of Improvement scale (PGI-I) was completed in VENUS II. Psychometric analyses examined internal consistency reliability and construct validity of the UFS-QOL; confirmatory factor analysis (CFA) compared model fit of the original and Revised Activities subscales. Analyses were conducted separately for VENUS I and II.ResultsOne hundred and fifty-seven patients in VENUS I and 429 in VENUS II were included. Changes in mean Symptom Severity and health-related quality of life (HRQoL) scale scores indicated symptom burden reductions and HRQoL improvements. Cronbach's alpha coefficients were high at baseline and after 12 weeks' treatment (all ≥0.76, meeting the >0.70 threshold), demonstrating strong internal consistency reliability. Correlations between UFS-QOL scores and bleeding diary responses (range: -0.35 to -0.63), and UFS-QOL scores and PGI-I responses (range: -0.48 to -0.70), ranged from moderate to strong after 12 weeks' treatment (all p < 0.0001). Patients with absence of bleeding or controlled bleeding after 12 weeks' treatment scored significantly better (p < 0.001) on each UFS-QOL scale than patients not achieving those end points, supporting construct validity. CFA confirmed model fit for the Revised Activities subscale.ConclusionsThe 1-month recall UFS-QOL, including the Revised Activities subscale, is a valid, reliable measure to assess UF symptoms and their impact on HRQoL.Trial registrationClinicalTrials.gov, NCT02147197 . Registered May 26, 2014; retrospectively registered. ClinicalTrials.gov, NCT02147158 . Registered May 26, 2014; retrospectively registered.

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Project description:BackgroundBack pain in childhood and adolescence increases the risk for back pain in adulthood, but validated assessment tools are scarce. The aim of this study was to validate the Young Spine Questionnaire (YSQ) in a German version (G-YSQ) in children and adolescents.MethodsChildren and adolescents between 10 and 16 years (N = 240, 166 females, mean age = 13.05 ± 1.70 years), recruited in chiropractic practices and schools, completed the G-YSQ (translated according to scientific guidelines) and the KIDSCREEN-10 (assessing health-related quality of life) at three time points. Test-retest reliability was determined calculating intraclass correlation coefficients [ICC(3,1)] using start and two week-data. Construct validity was investigated testing a priori hypotheses. To assess responsiveness, the patients additionally filled in the Patient Global Impression of Change (PGIC) after three months and the area under the curve (AUC) of receiver operating curves was calculated.ResultsThe ICC(3,1) was 0.88 for pain intensity and pain frequency, indicating good reliability, 0.68 for week prevalence and 0.60 for point prevalence, indicating moderate reliability. Pain intensity, frequency and prevalence differed between patients and controls (p < 0.001) and, except point prevalence, between older (> 12 years) and younger control participants (p < 0.01). Health-related quality of life of participants with severe pain (in one or several spinal regions) was lower (KIDSCREEN-10, total score: F(4,230) = 7.26, p < 0.001; KIDSCREEN-10, self-rated general health: H(4) = 51.94, p < 0.001) than that of participants without pain or with moderate pain in one spinal region. Thus, altogether these findings indicate construct validity of the G-YSQ. The AUC was 0.69 (95 % CI = 0.57-0.82) and 0.67 (95 % CI = 0.54-0.80) for week and point prevalence, respectively, indicating insufficient responsiveness of the G-YSQ.ConclusionsApart from the question on point prevalence, construct validity and sufficient test-retest reliability was shown for the G-YSQ. However, its responsiveness needs to be improved, possibly by asking for pain frequency during the last week instead of (dichotomous) week prevalence.Trial registrationClinicalTrials.gov, NCT02955342, registered 07/09/2016, https://clinicaltrials.gov/ct2/results?cond=&term=NCT02955342&cntry=CH&state=&city=Zurich&dist= .

Dataset Information

Psychometric Validation of the German Translation of the Quality of Life Questionnaire-Bronchiectasis (QOL-B)-Data from the German Bronchiectasis Registry PROGNOSIS.

Publications

Psychometric Validation of the German Translation of the Quality of Life Questionnaire-Bronchiectasis (QOL-B)-Data from the German Bronchiectasis Registry PROGNOSIS.

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