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

Abstract

Introduction: celiac disease is a chronic condition that requires continued treatment, with the resultant impact on health-related quality of life (HRQOL) of people who suffer it. Most studies in this field have used generic questionnaires to measure HRQOL in celiac patients. It was therefore decided to conduct a study to translate into Spanish and validate a specific questionnaire for celiac disease, the Celiac Disease Quality Of Life Survey (CD-QOL).Objectives: to translate and validate in Spanish the specific celiac disease questionnaire CD-QOL.Methods: a multicenter, prospective, observational study was designed consisting of two phases: In the first phase, the questionnaire was translated and adapted into Spanish using the translation/back translation procedure and an understandability study. In the second phase, internal consistency of the translated questionnaire was analyzed. For this, results of the CD-QOL were compared to those of EuroQol and the Daily Fatigue Impact Scale (D-FIS). Understandability of the translated and adapted questionnaire was tested in six patients, and the validation study was done in 298 celiac patients (201 treated with a gluten-free diet and 97 at diagnosis).Results: in both celiac groups, Cronbach's alpha coefficient was high (0.90), feasibility was excellent (99.2 % of patients completed all questions), and there were no ceiling and floor effects. Spearman correlation to EuroQol and D-FIS was statistically significant (p < 0.05). CD-QOL score was different depending on whether state of health was good, fair, or poor based on the EuroQol score.Conclusion: the Spanish version of the CD-QOL is a valid tool for measuring HRQOL in celiac patients.

Psychological morbidity of celiac disease: A review of the literature

“…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. Mustalahti et al reported a positive effect of the GFD both in symptomatic and screen-detected patients, 37 Johnston et al suggested the benefits were limited to those presenting with symptomatic disease, 38 Vilppula et al 40 reported no change of the QoL in screen-detected patients on GFD and finally, Ukkola et al described that the QoL improved in symptomatic and in screen-detected symptomatic patients but not in screen-detected asymptomatic patients 41 ( Figure 1).…”

Calidad de vida en adultos del Paraguay con enfermedad celiaca

“…Previa explicación verbal del estudio a los afectados y familiares en su lengua nativa y llenado del consentimiento informado, se registraron los datos demográficos y se les solicitó el llenado del cuestionario CD-QOL. Según Casellas et al, se considera mala CVRS si el puntaje total es entre 0 y 50 puntos, regular entre 51 y 70 puntos y buena entre 71 a 100 puntos 17 . Las variables fueron procesadas con el programa informático Epi Info © versión 7.2.…”

“…La CVRS puede ser medida por una variedad de cuestionarios tanto generales como específicos para cada enfermedad. El más utilizado es CD-QOL [10][11][12][13][14][15][16][17] . Este instrumento fue aplicado en el sur de Brasil obteniéndose buena calidad de vida en 75% de los encuestados 18 .…”

“…Fueron excluidos los sujetos dependientes o con incapacidad de comunicarse, sujetos con discapacidades físicas invalidantes permanentes y aquellos que no firmaron el consentimiento informado. Para esta investigación se aplicó el cuestionario CD-QOL validado al idioma castellano 15,17 . Este instrumento consiste en 20 preguntas cuyas respuestas se puntúa con una escala de Likert de 1 al 5.…”

“…La sumatoria final varía desde 0 puntos (peor calidad de vida) hasta 100 (mejor calidad de vida). Las preguntas se refieren a cuatro dimensiones: disforia, limitaciones, salud y tratamiento inadecuado 15,17 .…”