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      Análisis de la calidad de vida relacionada con la salud en pacientes celiacos Translated title: Analysis of health-related quality life in celiac patients

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          Abstract

          Resumen Introducción: el tratamiento de la enfermedad celiaca es una dieta sin gluten de por vida, lo cual puede repercutir en la calidad de vida (CV) de los pacientes. Objetivos: nuestro objetivo fue evaluar la CV de una muestra de niños celiacos y estudiar los factores que pueden influir en la misma. Material y métodos: estudio observacional descriptivo. Se estudió la CV con el cuestionario Celiac Disease Dux Questionnaire (CDDUX). Se estudió la adherencia con el cuestionario Celiac Dietary Adherence Test (CDAT) y la determinación de péptidos inmunogénicos del gluten (GIP) en heces. Se recogieron datos sociodemográficos y clínicos, y se elaboró una encuesta ad hoc. Resultados: se incluyeron 80 pacientes. La mediana del CDDUX fue de 44,04 puntos (CV "neutra"); la de la subescala "comunicación" fue de 58,3 ("neutra"), la de "tener EC" fue de 25 ("mala") y la de "dieta" fue de 41,6 puntos ("neutra"). La CV fue peor en los pacientes con familiares celiacos ("mala" frente a "neutra", p = 0,02) y en aquellos insatisfechos con las características somatosensoriales y el precio de los alimentos sin gluten ("mala" frente a "neutra", p = 0,02). Los insatisfechos con la textura de estos alimentos tenían peor CV ("mala" frente a "neutra", p = 0,009). Los que consideraban comer fuera de casa como factor inductor de transgresiones referían una CV "mala" y los que no, una "neutra" (p = 0,03). Conclusiones: los pacientes celiacos tienen una CV neutra. El hecho de tener familiares con enfermedad celiaca, la insatisfacción con los alimentos sin gluten y el considerar un factor inductor de transgresiones el comer fuera de casa se relacionaron con una peor calidad de vida.

          Translated abstract

          Abstract Introduction: the treatment of celiac disease is gluten-free diet for life. This can impact the quality of life (QoL) of patients. Objectives: the objective was to evaluate the QoL and the factors with an impact on QoL in a sample of celiac children. Methods and materials: a descriptive observational study. QoL was evaluated using the Celiac Disease Dux Questionnaire (CDDUX). Adherence to gluten-free diet was assessed with the Celiac Dietary Adherence Test (CDAT) and the presence of gluten immunogenic peptides (GIP) in the feces. Sociodemographic and clinical data were collected, and an ad-hoc survey was developed. Results: eighty patients were included. Median CDDUX score was 44.04 points (QoL: "neutral"). Subscale scores included: "communication", 58.3 points ("neutral"); "having CD", 25 points ("Bad"); and "diet", 41.6 points ("neutral"). QoL was worse among patients with celiac relatives (the result of the survey was "bad" vs. "neutral" with p = 0.02) and among those who found unsatisfactory the somatosensory characteristics and the price of gluten-free food (the result of the survey was "bad" vs. "neutral" with p = 0.02). Those who found unsatisfactory the texture of these food reported a worse QoL ("bad" vs. "neutral", p = 0.009). Those who reported eating outside the home as a transgression inducer reported a "bad" QoL; those who did not, reported a "neutral" QoL (p = 0.03). Conclusions: celiac patients report a "neutral" QoL. A poorer QoL was related to having celiac relatives, finding gluten-free food unsatisfactory, and considering eating outside the home as an inducer.

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          Most cited references25

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          Systematic review with meta-analysis: Dietary adherence influences normalization of health-related quality of life in coeliac disease.

          Gluten-free diet is the keystone of coeliac disease treatment. Despite adherence, some patients continue to suffer from symptoms that negatively influence health-related quality of life (HRQoL). Therefore we performed a systematic review and meta-analysis to assess the effect of gluten-free diet on HRQoL in coeliac disease. We specifically sought for determinants that negatively influenced HRQoL.
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            CDDUX: a disease-specific health-related quality-of-life questionnaire for children with celiac disease.

            The development of a disease-specific, health-related, quality-of-life questionnaire for children ages 8 to 18 with celiac disease (CD), together with a parent-as-proxy version. We used a focus-group method (bottom-up approach) to investigate the impact of CD on children's everyday lives and selected 24 items to create a preliminary disease-specific questionnaire. This questionnaire, together with the complementary generic quality-of-life questionnaire DUX-25, was sent to 756 children with CD in the Netherlands and was returned by 530 of them. With the help of statistical analyses (Cronbach alpha, factor analysis, Pearson correlation, Student t test, paired samples t test, and item response theory), we tested the psychometric performance of the 24 items. We reduced the questionnaire to 12 items: the Celiac Disease DUX (CDDUX). The CDDUX has 3 subscales: "Communication" (3), "Diet" (6), and "Having CD" (3). This questionnaire proved to be reliable, valid, and feasible and able to discriminate between perception of severity in cases of CD as assessed by parents. Children with a better perception of their own health status have a higher score on the CDDUX questionnaire. The whole group seems to have a lower quality of life than the healthy reference group on all domains of the DUX-25. The new disease-specific questionnaire CDDUX provides information about how children with CD think and feel about their illness. The questionnaire may enable researchers and clinicians to determine the consequences of this illness and the effects of clinical interventions on several aspects of daily living.
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              Predictors of reduced health-related quality of life in adults with coeliac disease.

              Data available on predictors of reduced health-related quality of life in coeliac disease are not consistent. To test predictors of reduced health-related quality of life, described in the literature, by a multivariate approach. 1000 adult coeliacs of the German Coeliac Society completed a medical and a sociodemographic questionnaire, the Short-Form Health Survey (SF-36), the Coeliac Disease Questionnaire and the Hospital Anxiety and Depression Scale within a postal survey. Predictors of reduced health-related quality of life were tested for by logistic regression analysis. Physical comorbidities (beta = -0.41; OR = 0.66, P < 0.001) and mental disorder (beta = 0.88; OR = 2.4, P = 0.03) were associated with a reduced physical summary score of the SF-36. Mental disorder (beta = 2.5; OR = 11.9, P < 0.001), physical comorbidities (beta = -0.26; OR = 0.77, P = 0.004) and younger age at diagnosis (beta = -0.10; OR = 0.91, P = 0.05) predicted a reduced mental summary score of the SF-36. Mental disorder (beta = 0.90; OR = 2.5, P = 0.03), non-compliance with gluten-free diet (beta = 0.44; OR = 1.6, P = 0.009), active medical comorbidities (beta = -0.28; OR = 0.76, P = 0.007) and dissatisfaction with doctor-patient communication (beta = 0.55; OR = 1.7, P = 0.03) were associated with reduced Coeliac Disease Questionnaire scores. Reduced health-related quality of life in coeliac disease is associated not only with physical and mental comorbidities, but also with non-compliance with gluten-free diet and dissatisfaction with doctor-patient communication.
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                Author and article information

                Journal
                nh
                Nutrición Hospitalaria
                Nutr. Hosp.
                Grupo Arán (Madrid, Madrid, Spain )
                0212-1611
                1699-5198
                August 2021
                : 38
                : 4
                : 715-721
                Affiliations
                [2] Oviedo orgnameHospital Universitario Central de Asturias orgdiv1Unidad de Gastroenterología-Hepatología y Nutrición Spain
                [1] Oviedo orgnameHospital Universitario Central de Asturias orgdiv1Área de Gestión Clínica de Pediatría Spain
                Article
                S0212-16112021000400715 S0212-1611(21)03800400715
                10.20960/nh.03538
                0274c5f0-388c-415f-833b-c380fa4fa36c

                This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License.

                History
                : 26 March 2021
                : 25 January 2021
                Page count
                Figures: 0, Tables: 0, Equations: 0, References: 27, Pages: 7
                Product

                SciELO Spain

                Categories
                Trabajos Originales

                Quality of life,Adherence,CDDUX (Celiac Disease Dux),Calidad de vida,Adherencia

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