Delay to celiac disease diagnosis and its implications for health-related quality of life

Abstract

BackgroundTo determine how the delay in diagnosing celiac disease (CD) has developed during recent decades and how this affects the burden of disease in terms of health-related quality of life (HRQoL), and also to consider differences with respect to sex and age.MethodsIn collaboration with the Swedish Society for Coeliacs, a questionnaire was sent to 1,560 randomly selected members, divided in equal-sized age- and sex strata, and 1,031 (66%) responded. HRQoL was measured with the EQ-5D descriptive system and was then translated to quality-adjusted life year (QALY) scores. A general population survey was used as comparison.ResultsThe mean delay to diagnosis from the first symptoms was 9.7 years, and from the first doctor visit it was 5.8 years. The delay has been reduced over time for some age groups, but is still quite long. The mean QALY score during the year prior to initiated treatment was 0.66; it improved after diagnosis and treatment to 0.86, and was then better than that of a general population (0.79).ConclusionsThe delay from first symptoms to CD diagnosis is unacceptably long for many persons. Untreated CD results in poor HRQoL, which improves to the level of the general population if diagnosed and treated. By shortening the diagnostic delay it is possible to reduce this unnecessary burden of disease. Increased awareness of CD as a common health problem is needed, and active case finding should be intensified. Mass screening for CD might be an option in the future.

Screening for celiac disease in the general population and in high‐risk groups

“…With increased awareness of CD, the diagnostic delay is likely to decrease. At present, some studies suggest that the delay is 6 years, 80,85 but others suggest that it is less (4.9 years). 135 Finally, Park et al 136 recently compared two different strategies to prevent bone loss and fractures in patients with undiagnosed or subclinical CD.…”

“…2,33,78,79 Furthermore, increasing numbers of CD patients are diagnosed because of extraintestinal symptoms or by screening of at-risk groups. 73,74 Probably due to the vague nature of presenting symptoms, the delay from first symptoms to CD diagnosis has been reported to be unacceptably long, at between 5-10 years for many persons; 73,[80][81][82][83][84][85] and so the need for earlier diagnosis, even by mass screening, has been advocated.…”

Factors associated with long diagnostic delay in celiac disease

“…Classical symptoms are diarrhea and poor growth or weight loss, but a variety of extraintestinal and atypical presentations are becoming increasingly common [1]. The heterogeneous clinical picture constitutes a challenge to physicians, and the average diagnostic delay is indeed very long, up to 12 years [2][3][4][5][6][7].…”

“…Further, untreated disease predisposes to complications such as osteoporotic fractures [10], infertility [11,12] and intestinal lymphoma [13,14]. An early initiated gluten-free diet reduces the incremental burden to health care and the risk of complications and also improves health-related quality of life [2,5,8,15].…”

Prevalence of Asthma and Allergic Rhinitis in Children with Celiac Disease

“…2016; 26(6):e6358. 5 cannot be completely excluded (31,32). A cohort study that examined the association between CD and asthma from a different perspective found no increased risk of asthma in the children of parents diagnosed with CD (33).…”