Desenvolvimento da versão portuguesa do celiac disease questionnaire

Abstract

Celiac disease is characterized as a permanent and chronic intolerance to the gluten ingestion. The only effective treatment is the lifelong gluten-free diet, which implies radical changes in the patient’s life and eating habits with a constant challenge and potential shifts in their health-related quality of life. The health-related quality of life occupies an important place as a research subject in different areas of human activity. However we do not found in the literature specific instruments adapted to the Portuguese reality that could measure the health-related quality of life in celiac patients. Then our goal is to develop the Portuguese version of the Celiac Disease Questionnaire - CDQ (developed by Dr. Winfried Häuser team in 2007), which may contribute to the identification of factors that influence the adult celiac patients health-related quality of life. We carried out the translation, cultural and functional equivalence of measures with a preliminary study. Subsequently we applied the CDQ to 231 celiac patients and proceeded with a component analysis and reliability. As in the original version, the analysis of the Portuguese version suggests the existence of a four dimensions model with a KMO coefficient of 0.897. Nevertheless, we obtained a different item factor loading in each dimension: emotional experience, social participation, fears and concerns, gastrointestinal symptoms. For each dimension the Cronbach's α ranged from 0.71 to 0.89 and an overall value of 0.91. The Portuguese version of the CDC proved to be a specific instrument for health-related quality of life assessment in adult celiac patients.RESUMOA doença celíaca caracteriza-se como uma intolerância permanente e crónica à ingestão de glúten. O único tratamento eficaz é a restrição de glúten da alimentação de forma definitiva, o que implica uma mudança radical nos hábitos alimentares e na vida da pessoa, constituindo um constante desafio e com potenciais alterações na sua perceção de qualidade de vida. Ocupando o estudo da qualidade de vida um alvo de interesse em diversas áreas da atividade humana, não encontrámos na literatura todavia instrumentos, adaptados à realidade portuguesa, que pudessem avaliar a perceção de qualidade de vida na pessoa celíaca adulta. Foi então nosso objetivo desenvolver a versão portuguesa do Celiac Disease Questionnaire - CDQ (desenvolido pela equipa do Doutor Winfried Häuser em 2007), que possa contribuir para a identificação de fatores que influenciam a perceção de qualidade de vida da pessoa celíaca adulta. Procedemos à tradução e equivalência das medidas a nível cultural e funcional através da realização de um estudo preliminar. Aplicamos posteriormente o CDQ a 231 pessoas celíacas adultas e procedemos à sua análise fatorial e consistência interna. Tal como na versão original, a análise da estrutura fatorial da versão portuguesa sugere a existência de quatro dimensões com um coeficiente KMO de 0,897. Todavia, obtivemos um agrupamento diferente dos itens em cada uma das dimensões: experiencia emocional, participação social, medos e preocupação, sintomas gastrointestinais. Para cada dimensão o α de Cronbach variou entre 0,71 e 0,89 e o valor de 0,91 no global. A versão portuguesa do CDC revelou-se um instrumento específico de avaliação da perceção de qualidade de vida sensível e capaz de avaliar de forma individual e específica alguns aspectos da população celíaca adulta.

Quality of Life Perception among Portuguese Celiac Patients: A Cross-Sectional Study Using the Celiac Disease Questionnaire (CDQ)

“…This study of Portuguese CD individuals' QoL was performed during the COVID-19 pandemic. A previous survey validating CQD in Portuguese was conducted in 2011 in Portugal [38] and presented a similar number of participants (n = 231) to our study (n = 234). The authors found a similar Cronbach's alpha (0.910) [38] to ours (0.956) for CDQ.…”

“…A previous survey validating CQD in Portuguese was conducted in 2011 in Portugal [38] and presented a similar number of participants (n = 231) to our study (n = 234). The authors found a similar Cronbach's alpha (0.910) [38] to ours (0.956) for CDQ. However, the study did not show the results of QoL obtained by the CDQ or sociodemographic characteristics, which prevented us from making direct comparisons.…”

“…This is a recent study performed on the evaluation of QoL in Portuguese celiac patients using the CDQ validated for the Portuguese population [38]. The perception of QoL in celiacs has garnered significant interest among health professionals and researchers generating data to guide public policies and treatments [11,12,21,28,29,44], since the burden of symptoms and a lifelong GFD are significant factors in celiacs' lives.…”

“…Studies have shown that it is an effective, efficient, and low-cost way to recruit study participants and allows for a larger sample size and a shorter completion time [40,41]. A self-administered instrument to evaluate the CD patients' quality of life (CDQ), developed by Häuser et al [11] and validated for the Portuguese population by Lobão et al [38] was used. The CDQ consists of 4 domains with 7 items each (emotions, gastrointestinal symptoms, concerns, and social), totalling 28 items.…”

“…CDQ was first applied in Germany [11] and later translated and applied in other countries, such as Italy [6], Spain [29], France [30], Turkey [28], the United States [31], Brazil [12], India [32], Poland [8], Iran [33], Australia [34], Argentina [35], Morocco [36], Hungary [37], among others. In Portugal, a study translated the CDQ into Portuguese and validated it [38], but no recent national data on CD quality of life exists. Therefore, this is the first study on Portuguese CD individuals' QoL using the same questionnaire used in other countries, which is essential for comparisons among different populations regarding a specific health problem such as CD.…”