Department of Pediatrics, Örebro University Hospital, Örebro, Sweden ; Clinical Epidemiology Unit, Department of Medicine, Karolinska Institutet, Stockholm, Sweden.
Division of Epidemiology and Public Health, University of Nottingham, Nottingham City Hospital, Nottingham, UK.
United European Gastroenterol J. 2015 Apr;3(2):146-59. doi: 10.1177/2050640614562599.
Celiac disease (CD) is a lifelong disorder. Patients are at increased risk of complications and comorbidity.
We conducted a review of the literature on patient support and information in CD and aim to issue recommendations about patient information with regards to CD.
We searched PubMed for English-language articles published between 1900 and June 2014, containing terms related to costs, economics of CD, or education and CD.
Papers deemed relevant by any of the participating authors were included in the study.
No quantitative synthesis of data was performed. Instead we formulated a consensus view of the information that should be offered to all patients with CD.
There are few randomized clinical trials examining the effect of patient support in CD. Patients and their families receive information from many sources. It is important that health care personnel guide the patient through the plethora of facts and comments on the Internet. An understanding of CD is likely to improve dietary adherence. Patients should be educated about current knowledge about risk factors for CD, as well as the increased risk of complications. Patients should also be advised to avoid other health hazards, such as smoking. Many patients are eager to learn about future non-dietary treatments of CD. This review also comments on novel therapies but it is important to stress that no such treatment is available at present.
Based on mostly observational data, we suggest that patient support and information should be an integral part of the management of CD, and is likely to affect the outcome of CD.
乳糜泻（CD）是一种终身疾病。患者发生并发症和合并症的风险增加。
我们对 CD 患者支持和信息的文献进行了综述，旨在针对 CD 患者信息发布相关建议。
我们在 PubMed 中检索了 1900 年至 2014 年 6 月期间发表的与 CD 的成本、经济学或教育相关的英文文章，使用了与成本、经济学或教育相关的术语。
由任何一位参与作者认为相关的文章均纳入研究。
未对数据进行定量综合。相反，我们制定了一个共识性观点，认为应该向所有 CD 患者提供哪些信息。
几乎没有随机临床试验来检验患者支持对 CD 的影响。患者及其家属从许多来源获得信息。医疗保健人员引导患者了解互联网上大量的事实和评论非常重要。对 CD 的了解可能会提高饮食依从性。应向患者教育有关 CD 的当前危险因素知识，以及并发症风险增加的情况。还应建议患者避免其他健康危害，如吸烟。许多患者渴望了解 CD 的未来非饮食治疗方法。这篇综述还评论了新的治疗方法，但重要的是要强调，目前没有这种治疗方法。
基于大部分观察性数据，我们认为患者支持和信息应该是 CD 管理的一个组成部分，并且可能会影响 CD 的结果。
