Department of Public Health and Clinical Medicine, Epidemiology and Global Health, Umeå University, Umeå, Sweden.
BMC Gastroenterol. 2011 Nov 7;11:118. doi: 10.1186/1471-230X-11-118.
To 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.
In 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.
The 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).
The 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.
为了确定在最近几十年中，乳糜泻（CD）的诊断延迟是如何发展的，以及这如何影响健康相关生活质量（HRQoL）方面的疾病负担，还考虑了性别和年龄方面的差异。
与瑞典乳糜泻学会合作，向 1560 名随机选择的成员发送了一份问卷，分为大小相等的年龄和性别组，有 1031 名（66%）人做出了回应。HRQoL 使用 EQ-5D 描述性系统进行测量，然后转换为质量调整生命年（QALY）评分。使用一般人群调查作为比较。
从第一症状到诊断的平均延迟时间为 9.7 年，从第一次就诊到诊断的平均延迟时间为 5.8 年。对于一些年龄组，这种延迟已经随着时间的推移而减少，但仍然相当长。在开始治疗前一年的平均 QALY 得分为 0.66；在诊断和治疗后，这一分数提高到 0.86，然后优于一般人群（0.79）。
对于许多人来说，从第一症状到 CD 诊断的延迟时间长得令人无法接受。未经治疗的 CD 会导致生活质量差，诊断和治疗后会改善到一般人群的水平。通过缩短诊断延迟，可以减少这种不必要的疾病负担。需要提高对 CD 作为常见健康问题的认识，并加强主动病例发现。未来可能会选择对 CD 进行大规模筛查。
