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      Quality of Life of Celiac Patients in Brazil: Questionnaire Translation, Cultural Adaptation and Validation

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          Abstract

          (1) Background: Celiac disease (CD) is a common autoimmune disorder. The manifestations of the disease and the obligatory life-long gluten-free diet (GFD) are associated with the impairment of patients’ quality of life. Therefore, the present study aimed to translate, culturally adapt and validate a celiac disease quality of life (CD-QoL) questionnaire and apply it to a representative number of Brazilian CD patients. (2) Methods: A cross-cultural Brazilian-Portuguese version of the CD-QoL was developed according to revised international guidelines. The questionnaire was administered to 450 celiac patients. The reliability, reproducibility and validity were studied. (3) Results: The Brazilian CD-QoL questionnaire presents valid measures of reproducibility and internal consistency. Early diagnosis is related to higher scores of Brazilian CD-QoL social, sub- and total scale. There was a positive correlation between higher education level and higher QoL. Individuals with partners tend to have a better emotional subscale of QoL. CD-patients who follow a strict GFD have highest QoL scale values. Men scored higher than women on the CD-QoL. All results were statistically significant except for the gastrointestinal subscale. (4) Conclusions: Brazilian CD-QoL allows comparative research between different celiac populations in the world. QoL research will help in the development of effective strategies to improve Brazilian celiac patients’ quality of life.

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          The Delphi method as a research tool: an example, design considerations and applications

          Chitu Okoli, Suzanne Pawlowski (2004)
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            Celiac disease: from pathogenesis to novel therapies.

            Detlef Schuppan, Yvonne Junker, Donatella Barisani (2009)
            Celiac disease has become one of the best-understood HLA-linked disorders. Although it shares many immunologic features with inflammatory bowel disease, celiac disease is uniquely characterized by (1) a defined trigger (gluten proteins from wheat and related cereals), (2) the necessary presence of HLA-DQ2 or HLA-DQ8, and (3) the generation of circulating autoantibodies to the enzyme tissue transglutaminase (TG2). TG2 deamidates certain gluten peptides, increasing their affinity to HLA-DQ2 or HLA-DQ8. This generates a more vigorous CD4(+) T-helper 1 T-cell activation, which can result in intestinal mucosal inflammation, malabsorption, and numerous secondary symptoms and autoimmune diseases. Moreover, gluten elicits innate immune responses that act in concert with the adaptive immunity. Exclusion of gluten from the diet reverses many disease manifestations but is usually not or less efficient in patients with refractory celiac disease or associated autoimmune diseases. Based on the advanced understanding of the pathogenesis of celiac disease, targeted nondietary therapies have been devised, and some of these are already in phase 1 or 2 clinical trials. Examples are modified flours that have been depleted of immunogenic gluten epitopes, degradation of immunodominant gliadin peptides that resist intestinal proteases by exogenous endopeptidases, decrease of intestinal permeability by blockage of the epithelial ZOT receptor, inhibition of intestinal TG2 activity by transglutaminase inhibitors, inhibition of gluten peptide presentation by HLA-DQ2 antagonists, modulation or inhibition of proinflammatory cytokines, and induction of oral tolerance to gluten. These and other experimental therapies will be discussed critically.
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              Translating health status questionnaires and evaluating their quality: the IQOLA Project approach. International Quality of Life Assessment.

              M Bullinger, J. Alonso, G Apolone … (1998)
              This article describes the methods adopted by the International Quality of Life Assessment (IQOLA) project to translate the SF-36 Health Survey. Translation methods included the production of forward and backward translations, use of difficulty and quality ratings, pilot testing, and cross-cultural comparison of the translation work. Experience to date suggests that the SF-36 can be adapted for use in other countries with relatively minor changes to the content of the form, providing support for the use of these translations in multinational clinical trials and other studies. The most difficult items to translate were physical functioning items, which used examples of activities and distances that are not common outside of the United States; items that used colloquial expressions such as pep or blue; and the social functioning items. Quality ratings were uniformly high across countries. While the IQOLA approach to translation and validation was developed for use with the SF-36, it is applicable to other translation efforts.
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                Author and article information

                Journal
                Journal ID (nlm-ta): Nutrients
                Journal ID (iso-abbrev): Nutrients
                Journal ID (publisher-id): nutrients
                Title: Nutrients
                Publisher: MDPI
                ISSN (Electronic): 2072-6643
                Publication date (Electronic): 25 August 2018
                Publication date Collection: September 2018
                Volume: 10
                Issue: 9
                Electronic Location Identifier: 1167
                Affiliations
                [1 ]Interdisciplinary Laboratory of Biosciences and Celiac Disease Research Center, School of Medicine, University of Brasilia, 70910-900 Brasilia, DF, Brazil; claudiapratesi@ 123456hotmail.com (C.P.P.); rosa.uenishi@ 123456gmail.com (R.H.U.); selleskinicole@ 123456gmail.com (N.S.); lenoragandolfi1@ 123456gmail.com (L.G.); pratesiunb@ 123456gmail.com (R.P.)
                [2 ]Post-graduate Program in Health Sciences, School of Health Sciences, University of Brasilia, Brasilia 70910-900, DF, Brazil
                [3 ]Department of Internal Medicine I, Klinikum Saarbrücken and Department of Psychosomatic Medicine and Psychotherapy, Technische Universität München, 80333 München, Germany; whaeuser@ 123456klinikum-saarbruecken.de
                [4 ]Department of Statistics, University of Brasilia, 70910-900 Brasilia, DF, Brazil; eynakano@ 123456gmail.com
                [5 ]Department of Nutrition, School of Health Sciences, University of Brasilia, 70910-900 Brasilia, DF, Brazil
                Author notes
                [* ]Correspondence: renatapz@ 123456yahoo.com.br ; Tel.: +55-61-98103-3600
                Author information
                https://orcid.org/0000-0002-3742-729X
                https://orcid.org/0000-0003-0370-3089
                Article
                Publisher ID: nutrients-10-01167
                DOI: 10.3390/nu10091167
                PMC ID: 6164351
                PubMed ID: 30149623
                SO-VID: d3c53d19-663e-4b7a-bcf2-a808dfb6513b
                Copyright © © 2018 by the authors.
                License:

                Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license ( http://creativecommons.org/licenses/by/4.0/).

                History
                Date received : 06 August 2018
                Date accepted : 22 August 2018
                Categories
                Subject: Article

                ScienceOpen disciplines: Nutrition & Dietetics
                Keywords: brazilian cd-qol,quality of life,celiac disease,questionnaire
                Data availability:
                ScienceOpen disciplines: Nutrition & Dietetics
                Keywords: brazilian cd-qol, quality of life, celiac disease, questionnaire

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