scholarly journals Relative responsiveness of the Chronic Respiratory Questionnaire, St. Georges Respiratory Questionnaire and four other health-related quality of life instruments for patients with chronic lung disease

2007 ◽  
Vol 101 (2) ◽  
pp. 308-316 ◽  
Author(s):  
Milo A. Puhan ◽  
Gordon H. Guyatt ◽  
Roger Goldstein ◽  
Jeff Mador ◽  
Douglas McKim ◽  
...  
2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Ann E. Aronu ◽  
Samuel N. Uwaezuoke ◽  
Uzoamaka V. Muoneke

Abstract Introduction Most of the studies reporting the negative impact of idiopathic nephrotic syndrome on health-related quality of life in children and adolescents were conducted with generic quality-of-life instruments rather than disease-specific instruments. The consistency of these studies' findings using these generic instruments is not well established. Aim This systematic review aims to determine the reliability of current generic quality-of-life instruments in assessing health-related quality of life among children and adolescents with idiopathic nephrotic syndrome. Methods We searched the PubMed, MEDLINE, EMBASE, and Google Scholar databases for articles published between 2000 and 2020, using appropriate descriptors. We included primary studies that met the eligibility criteria, independently screened their titles and abstracts, and removed all duplicates during the study-selection process. We resolved disagreements until a consensus was reached on study selection. We independently retrieved relevant data, including the generic quality-of-life instruments and the subjects’ and controls’ aggregate health-related quality of life scores, using a preconceived data-extraction form. Results Ten original articles were selected for qualitative and quantitative analyses. Some of the studies reported the following significant findings. The mean health-related quality of life scores for children with prevalent and incident nephrotic syndrome were 68.6 (range, 52.6–84.6) and 73.7 (range, 55.9–91.5), respectively. Children with idiopathic nephrotic syndrome and their controls with other chronic diseases had median scores of 65 (interquartile range, 59–68.75) and 62.2 (interquartile range, 58.05–65.78). Patients on oral immunosuppressive drug and intravenous rituximab reportedly had median scores of 76.2 and 72.6 and mean scores of 71.4 (range, 55.4–87.4) and 61.6 (range, 42.1–81.1) respectively for quality-of-life assessment on the ‘school functioning domain.’ Conclusions The health-related quality of life scores in patients with idiopathic nephrotic syndrome are consistently low. Lower scores occur in prolonged disease duration and severe clinical phenotypes, whereas the scores are higher than the scores obtained in other chronic diseases. These consistent findings underscore the reliability of the current generic instruments in assessing health-related quality of life in patients with idiopathic nephrotic syndrome.


Author(s):  
Fedrico Riva ◽  
Mariana Seoane ◽  
Michael Eduardo Reichenheim ◽  
Georgios Tsakos ◽  
Roger Keller Celeste

2020 ◽  
Author(s):  
Phillen Nozibuyiso Maqhuzu ◽  
Boglárka Lilla Szentes ◽  
Michael Kreuter ◽  
Thomas Bahmer ◽  
Nicolas Kahn ◽  
...  

Abstract Background: Health-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. Methods: We 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. Results: Within 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 % 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 % 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). Conclusion: A third of ILD patients experience a clinically relevant HRQL deterioration within 12 months, which is mainly predicted by lung function baseline value.


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