Development and Validation of a Celiac Disease Quality of Life Instrument for North American Children

Abstract

The CDPQOL, consisting of 13 to 17 questions, is a validated instrument for the measurement of HRQOL in children 8 to 18 years of age with CD living in the United States.

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

“…However, other aspects are not addressed, such as the difficulty for obtaining access to gluten-free foods, especially during times of social interaction. This fact is highlighted by Jordan et al, 13 who, when developing a questionnaire for U.S. celiac children, highlighted other relevant issues in the original cultural context, such as the regular consumption of food produced outside the home and difficulties eating in leisure situations, such as when travelling.…”

“…10,11 However, the use of the same tool in patients within a wide age range is debatable, as they face different situations and perform different social roles. 13 In the development of the original questionnaire through focal groups, only four adolescents participated in the study; this limitation is emphasized by the researchers. 7 Some aspects must be considered when using this translated and adapted version of the CDDUX.…”

“…4 Several QoL assessment studies in children and adolescents with CD have been published in the last decade, 5---13 with the validation of two specific questionnaires. The first one, the celiac disease DUX (CDDUX) 7 was developed by a Dutch pioneer group in QoL studies in celiac individuals and, in 2013, Jordan et al 13 validated a questionnaire for U.S. children and adolescents.…”

Psychological morbidity of celiac disease: A review of the literature

“…[24][25][26][27][28] The most widely used generic tools to estimate health-related QoL in CD were the Short Form Health Survey questionnaire 26 and the Psychological General Well-being index. 28 It is only recently that CD-specific questionnaires have been developed for pediatric 29,30 and adult patients 31,32 and translated into other languages. [33][34][35][36] Although screendetected 37,38 and asymptomatic CD patients 39 seem to have a better QoL than symptom-detected patients at the time of diagnosis, the effect of the GFD is still unclear.…”

Transcultural adaptation and validation of the Celiac Disease Quality of Life (CD-QOL) survey, a specific questionnaire to measure quality of life in patients with celiac disease

“…Four specific questionnaires to measure HRQOL in English-speaking celiac patients are available. Two of these, the Celiac Disease DUX (CDDUX) and the Celiac Disease Quality of Life Instrument for North American Children, were designed for children (11,12), while the other two instruments, the Coeliac Quality of Life Survey (CD-QOL) and the Celiac Disease Questionnaire (CDQ), were designed for adult celiac patients (13,14). However, none of them have been translated and validated in the Spanish-speaking population.…”