Enfermedad Celiaca

DELAY TO CELIAC DISEASE DIAGNOSIS AND ITS IMPLICATIONS FOR HELTH-RELATED QUALITY OF LIFE

Celiac disease (CD) is a permanent intolerance to gluten that induces an autoimmune reaction in the small intestinal mucosa resulting in inflammation, villous atrophy and malabsorption. Only effective treatment is a gluten-free diet. The CD untreated is associated with a risk for extensive negative health consequences. The symptoms are vague, which complicates the identification of CD cases. The delay is around 11 – 13 years from symptoms to diagnosis. Screening studies have shown five to 10 undiagnosed cases for every diagnosed case in some Western European countries.

Health-related quality of life (HRQoL) as an aspect of living with CD has been studied frequently and Euro-Quality of life 5 dimensions instrument, includes both a descriptive system, comprised of five health-related dimensions (mobility, self-care, usual, activities, pain/discomfort and anxiety/depression) divided into three levels of severity, and a visual analogue scale (VAS) for recording overall health.

Female with treated CD have been shown to experience worse HRQoL than males with treated CD. They concluded that the HRQoL before CD diagnosis is quantitatively similar to that of stroke patient, and that after initiated treatment it improved and was as good as that of the general population.

Previous studies have also lacked detailed analyses of various aspects, diagnostic delay and factors such as sex, age and time period for diagnosis. The aim of this study was to determine how the delay in diagnosing CD has developed during recent decades and how this affects the burden of disease in terms of HRQoL, and also to consider differences with respect to sex and age.

The study design was during 2009, they performed a cross-sectional questionnaire survey, of Swedish adults with CD, and the questionnaire was in Swedish. They studied members of the Swedish for Coeliacs in 2009. This is open to people with CD and other food intolerances and is the only one of its kind in the country. At the time of the study, the society had 15,659 members reporting CD, 11,094 of whom were 20 years of age or older. Someone author’s defined 29,096 individuals diagnosed with CD in Sweden, 26,047 who were still alive, based on biopsy information from a computerized search of all regional pathology departments. In total, 1,560 adults with reported CD were invited to participate, with 65 males and females randomly selected from each five-year interval from 20 years of age and above. A reported CD diagnosis based on medical expertise was required for inclusion. Questionnaire information was used to assess how their CD was diagnosed, and if a medical professional had recommended adherence to a gluten-free diet. Ninety-one members did not meet eligibility requirements, and they comprised three criteria groups; I) they did not have CD (34) II) CD diagnosis uncertain (33) and III) Age and/or sex not consistent based on register information and questionnaire responses. Questionnaires were administered by the Swedish Society for Coeliacs (CD population) and by statistics Sweden (general population), both distributed by the postal service to the persons´ home. The CD questionnaire included a section on delay to CD diagnosis. Information that could verify the CD diagnosis and self-reported degree of compliance with a gluten-free diet was also collected. About the year prior to initiate treatment

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