Dataset Information

Health-related quality of life in glomerular disease.

ABSTRACT: There is scant literature describing the effect of glomerular disease on health-related quality of life (HRQOL). The Cure Glomerulonephropathy study (CureGN) is an international longitudinal cohort study of children and adults with four primary glomerular diseases (minimal change disease, focal segmental glomerulosclerosis, membranous nephropathy, and IgA nephropathy). HRQOL is systematically assessed using items from the Patient-Reported Outcomes Measurement Informative System (PROMIS). We assessed the relationship between HRQOL and demographic and clinical variables in 478 children and 1115 adults at the time of enrollment into CureGN. Domains measured by PROMIS items included global assessments of health, mobility, anxiety, fatigue, and sleep impairment, as well as a derived composite measure incorporating all measured domains. Multivariable models were created that explained 7 to 32% of variance in HRQOL. Patient-reported edema consistently had the strongest and most robust association with each measured domain of HRQOL in multivariable analysis (adjusted ? [95% CI] for composite PROMIS score in children, -5.2 [-7.1 to -3.4]; for composite PROMIS score in adults, -6.1 [-7.4 to -4.9]). Female sex, weight (particularly obesity), and estimated glomerular filtration rate were also associated with some, but not all, domains of HRQOL. Primary diagnosis, disease duration, and exposure to immunosuppression were not associated with HRQOL after adjustment. Sensitivity analyses and interaction testing demonstrated no significant association between disease duration or immunosuppression and any measured domain of HRQOL. Thus, patient-reported edema has a consistent negative association with HRQOL in patients with primary glomerular diseases, with substantially greater impact than other demographic and clinical variables.

SUBMITTER: Canetta PA

PROVIDER: S-EPMC6743723 | biostudies-literature | 2019 May

REPOSITORIES: biostudies-literature

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Health-related quality of life in glomerular disease.

Canetta Pietro A PA Troost Jonathan P JP Mahoney Shannon S Kogon Amy J AJ Carlozzi Noelle N Bartosh Sharon M SM Cai Yi Y Davis T Keefe TK Fernandez Hilda H Fornoni Alessia A Gbadegesin Rasheed A RA Herreshoff Emily E Mahan John D JD Nachman Patrick H PH Selewski David T DT Sethna Christine B CB Srivastava Tarak T Tuttle Katherine R KR Wang Chia-Shi CS Falk Ronald J RJ Gharavi Ali G AG Gillespie Brenda W BW Greenbaum Larry A LA Holzman Lawrence B LB Kretzler Matthias M Robinson Bruce M BM Smoyer William E WE Guay-Woodford Lisa M LM Reeve Bryce B Gipson Debbie S DS

Kidney international 20190227 5

There is scant literature describing the effect of glomerular disease on health-related quality of life (HRQOL). The Cure Glomerulonephropathy study (CureGN) is an international longitudinal cohort study of children and adults with four primary glomerular diseases (minimal change disease, focal segmental glomerulosclerosis, membranous nephropathy, and IgA nephropathy). HRQOL is systematically assessed using items from the Patient-Reported Outcomes Measurement Informative System (PROMIS). We asse ...[more]

PMID: 30898342

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Project description: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 (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). CONCLUSION:Around 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.

Dataset Information

Health-related quality of life in glomerular disease.

Publications

Health-related quality of life in glomerular disease.

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