Translation, cultural adaptation, and validation of the celiac disease DUX (CDDUX)

Abstract

The questionnaire was translated and adapted according to all the proposed steps, with all equivalences adequately met. It is a valid tool to access the QoL of celiac children and adolescents in the translated language.

Activities, Participation and Quality of Life Concepts in Children and Adolescents with Celiac Disease: A Scoping Review

“…The 23 articles included five main objectives, as follows: (1) Twelve articles involved assessment of QOL [ 13 , 16 , 19 , 26 , 29 , 31 , 32 , 33 , 35 , 36 , 37 , 42 ]; (2) Seven articles were associated with adherence to the GFD [ 28 , 35 , 36 , 39 , 41 ]; (3) Six articles were associated with the impact of a GFD on daily life [ 18 , 27 , 33 , 38 , 43 ]; (4) Five of the 23 articles were related to the impact of CD on the family or parents [ 25 , 29 , 38 , 39 , 40 ]; and (5) Five of the articles explored the relationships of QOL and adherence [ 13 , 28 , 35 , 36 , 41 ].…”

“…A range of disease-specific questionnaires in which the food-related activities identified were developed, implemented or validated. The celiac disease DUX (CDDUX), a disease-specific health-related quality-of-life questionnaire for children with CD, developed in The Netherlands to assess both self-report and parental report of health-related QOL [ 16 ], has been translated and is in use in four additional countries [ 13 , 26 , 31 , 42 ]. Six of the articles used self-report questionnaires developed specifically for the purpose of the study [ 28 , 30 , 36 , 37 , 39 ].…”

“…Seven of the articles used frequency ratings of avoidance, difficulty, and negative feelings, such as anger and embarrassment [ 19 , 27 , 28 , 30 , 35 , 37 , 39 ]. Five articles, which utilized the same questionnaire, used a scale that rated feelings concerning CD on a scale of a very good to a very bad feeling [ 13 , 16 , 26 , 31 , 42 ]. One article used a non-disease-specific questionnaire that rated QOL on a scale of very unhappy to very happy [ 29 ].…”

“…These activities appeared in six articles and included ‘being offered gluten food’, ‘thinking of gluten food’, ‘not being able to eat anything’, ‘following a lifelong diet’, ‘paying attention to what I eat’, ‘having CD’, ‘not eating what others eat’, and ‘following a diet for my CD’. Five of these articles described the development of the CDDUX [ 16 ], as well as translations and cultural implementation of the questionnaire [ 13 , 26 , 31 , 42 ]. Additional activities coded in the ‘looking after one’s health’ category are detailed in Table 2 .…”

Systematic review: patient‐reported outcome measures in coeliac disease for regulatory submissions

“…As this measure was not designed to test longitudinal treatment response, it was not given a comprehensive review. We also did not conduct a full review of instruments such as the Coeliac Disease‐Specific Pediatric Health‐Related Quality of Life Instrument, Dutch Child AZL TNO Quality of Life Instrument, and CDDUX, which were developed exclusively for paediatric patients. Finally, measures such as the Celiac Disease Adherence Test, Gluten‐Free Diet Compliance Questionnaire and the Impact of Adhering to a Gluten‐Free Diet Questionnaire were not reviewed as they focused primarily on adherence to gluten‐free diet, a modifying variable for treatment effectiveness rather than true clinical improvement.…”