Department of Public Health and Clinical Medicine, Epidemiology and Global Health, Umeå University, 901 85 Umeå, Sweden.
J Med Screen. 2011;18(4):187-92. doi: 10.1258/jms.2011.011081. Epub 2011 Nov 21.
To compare the health-related quality-of-life (HRQoL) of children with screening-detected coeliac disease (CD), before they learned of their diagnosis, with that of children without CD and in those previously diagnosed with CD.
In a cross-sectional CD screening study ('ETICS': Exploring the Iceberg of Coeliacs in Sweden), of 10,041 Swedish 12-year-olds invited, 7567 (75%) consented to participate, and 7208 (72%) children without previously diagnosed CD had serological markers analysed. Before the screening results were known, 7218 children (72%) and 6524 of their parents (65%) answered questionnaires. Questionnaires included the Swedish child-friendly pilot version of the EQ-5D instrument and proxy version of the EQ-5D instrument, which are generic tools used to describe HRQoL.
We found no significant difference in HRQoL between the groups of children with screening-detected CD, without CD, and those previously diagnosed with CD.
The HRQoL reported by 12-year-olds with screening-detected CD, before they learned of their diagnosis, was not worse than that of the children without CD or those previously diagnosed with CD. Thus, mass screening for CD should not be justified on the basis that children with unrecognized CD have a poor HRQoL. However, because these children rated their HRQoL before diagnosis and treatment, they may not have recognized or perceived symptoms as severe enough to seek medical attention which demonstrates how difficult clinical/active case finding can be. Mass screening may still, therefore, be considered if the aim is early detection and prevention of future complications.
比较接受筛查诊断出的乳糜泻（CD）患儿在确诊前、未确诊时以及先前确诊时的健康相关生活质量（HRQoL）。
在一项针对 10041 名瑞典 12 岁儿童的 CD 筛查研究（“ETICS”：探索瑞典乳糜泻冰山）中，7567 名（75%）同意参与，7208 名（72%）无先前确诊 CD 的儿童进行了血清标志物分析。在筛查结果未知之前，7218 名儿童（72%）及其 6524 名家长（65%）回答了调查问卷。调查问卷包括瑞典儿童友好型 EQ-5D 工具和 EQ-5D 工具的代理版本，这些都是用于描述 HRQoL 的通用工具。
我们发现筛查诊断出的 CD 患儿、无 CD 患儿和先前确诊 CD 患儿之间的 HRQoL 无显著差异。
在确诊前，筛查诊断出的 CD 患儿报告的 HRQoL 并不比无 CD 患儿或先前确诊 CD 患儿差。因此，不能因为未被识别的 CD 患儿 HRQoL 较差而支持进行 CD 大规模筛查。然而，由于这些儿童在诊断和治疗前评估了自己的 HRQoL，他们可能没有意识到或认为症状严重到足以寻求医疗关注，这表明临床/主动病例发现有多么困难。因此，如果目标是早期发现和预防未来的并发症，仍可考虑进行大规模筛查。
