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Health-related quality of life using specific and generic questionnaires in Spanish coeliac children.

ABSTRACT: BACKGROUND:We aimed to compare the perception of health-related quality of life (HRQOL) and related factors in Spanish coeliac children and their parents, using two questionnaires, the generic KIDSCREEN-52 and the specific the Celiac Disease DUX (CDDUX), and to assess the correlation between them. METHODS:Coeliac children, aged 8-18, who are members of the Madrid Coeliac Association (MCA) and their parents, answered the Spanish version of the CDDUX and KIDSCREEN-52 questionnaires via e-mail. CDDUX was answered by 266 children and 428 parents and KIDSCREEN-52 by 255 children and 387 parents. Linear regression models were fitted to evaluate the association of demographic and clinical factors with HRQOL scores. CDDUX scores were compared with the subjective perception of health status assessed by the first question of KIDSCREEN-52. The correlation between the questionnaires was analysed. RESULTS:We found that the main factors that negatively affected HRQOL were having social or economic difficulties associated with following the diet and having transgression-related symptoms. The maximum correlation between the questionnaires was 0.309 and?-?0.254 in parents and children respectively. CONCLUSIONS:Although there is a poor correlation between the two questionnaires, both agreed that the main concerns of the respondents were related to the social and economic difficulties of following the diet. It would be interesting to use both types of questionnaires in order to perform a more complete assessment of HRQOL in coeliac children. TRIAL REGISTRATION:Not applicable.

SUBMITTER: Barrio J

PROVIDER: S-EPMC7382098 | biostudies-literature | 2020 Jul

REPOSITORIES: biostudies-literature

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Health-related quality of life using specific and generic questionnaires in Spanish coeliac children.

Barrio Josefa J Cilleruelo Maria Luz ML Román Enriqueta E Fernández Cristina C

Health and quality of life outcomes 20200725 1

<h4>Background</h4>We aimed to compare the perception of health-related quality of life (HRQOL) and related factors in Spanish coeliac children and their parents, using two questionnaires, the generic KIDSCREEN-52 and the specific the Celiac Disease DUX (CDDUX), and to assess the correlation between them.<h4>Methods</h4>Coeliac children, aged 8-18, who are members of the Madrid Coeliac Association (MCA) and their parents, answered the Spanish version of the CDDUX and KIDSCREEN-52 questionnaires ...[more]

PMID: 32711513

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Project description:BACKGROUND:The utility of generic health-related quality of life (HRQoL) questionnaires in patients with systemic lupus erythematosus (SLE) is uncertain. We compared the performance of generic (SF36) and specific (SLEQOL) HRQoL surveys by examining their associations with the Global Rating of Change (GRC) and SLE clinical indicators. METHODS:The study included SLE patients who attended a single-center rheumatology clinic between 2013 and 2017. Patients completed both specific (SLEQOL) and generic (SF36) surveys and rated their GRC compared to the previous visit using a 7-point Likert scale on the same day of routine visits. Based on GRC scores, patients' change in HRQoL was categorized as "no change," "deterioration," or "improvement." Disease activity (SLEDAI-2K), flare, and lupus low disease activity state (LLDAS) were assessed at each visit, and organ damage (SDI) was determined annually. Pairwise correlations between SLEQOL and SF36 components were examined, and associations between GRC status and SLE disease indicators were compared using generalized estimating equations (GEE). RESULTS:Three hundred thirty-seven patients with 2062 visits were included in the analysis. SLEQOL correlated significantly with SF36. Patients reported improvements in HRQoL in 58%, deterioration in 15%, and "no change" in 27% of all visits. Compared to the "no change" group, mean SF36 and SLEQOL scores were significantly lower in the deterioration group and higher in the improvement group. The magnitude of changes observed with SLEQOL and SF36 in the deterioration and improvement groups was similar. Patients in LLDAS had significantly higher mean scores in both SLEQOL and SF36. In contrast, patients with active disease, especially those with cutaneous, renal, central nervous system, and musculoskeletal activity, had significantly lower SLEQOL and SF36. Flare and organ damage were also associated with lower SLEQOL and SF36-PCS (physical component) but not with SF36-MCS (mental component). CONCLUSION:SLEQOL and SF36 similarly describe HRQoL in SLE. Both instruments demonstrated strong associations with GRC-based deterioration or improvement as well as SLE disease status. LLDAS was associated with improved HRQoL.

Project description:In this study the reliability and validity of generic and disease-specific questionnaires has been assessed focusing on responsiveness. This is part of a study on the effects of recurrent acute otitis media (rAOM) on functional health status (FHS) and health-related quality of life (HRQoL) in 383 children with rAOM participating in a randomized clinical trial. The following generic questionnaires were studied: 1. RAND general health rating index, 2. Functional Status Questionnaire (FSQ Generic and FSQ Specific), 3. TNO-AZL Infant Quality of Life (TAIQOL), and the following disease-specific questionnaires: 1. Otitis Media-6 (OM-6), 2. Numerical rating scales (NRS) for child and caregiver (NRS Child and NRS Caregiver), and 3. a new Family Functioning Questionnaire (FFQ). Reliability was good to excellent (Cronbach's alpha range 0.80-0.90, intraclass correlation coefficient range 0.76-0.93). Moderate to strong correlations were found between the questionnaires as well as between questionnaires and relevant clinical indicators (r = 0.29-0.49), demonstrating construct validity. Discriminant validity for children with few versus frequent episodes of acute otitis media per year was good for most questionnaires (P < 0.004) but poor for the otitis media-related subscales of the TAIQOL (P = 0.10-0.97) and both NRS (P = 0.22 and 0.48). Except for the TAIQOL subscales, change scores were significant (P < 0.003) for generic and disease-specific questionnaires. Effect sizes were somewhat higher for disease-specific compared to generic questionnaires (0.55-0.95 versus 0.32-0.60) except for the TAIQOL subscales, which showed very poor sensitivity to change. Anchor-based methods resulted in a somewhat larger range of estimates of MCID than distribution-based methods. Combining distribution-based and anchor-based methods resulted in similar ranges for the minimally clinical important differences for generic and disease-specific questionnaires: 2-15 points on a 0-100 scale. Apart from the generic TAIQOL subscales, both generic and disease-specific questionnaires used in this study showed good psychometric qualities and responsiveness for use in clinical studies on children with rAOM.

Dataset Information

Health-related quality of life using specific and generic questionnaires in Spanish coeliac children.

Publications

Health-related quality of life using specific and generic questionnaires in Spanish coeliac children.

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