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乳糜泻患儿的随访——陷入翻译困境?

Follow-up of children with celiac disease - lost in translation?

机构信息

Institute of Gastroenterology, Nutrition and Liver Diseases, Schneider Children's Medical Center of Israel, Petach Tikva, Israel.

出版信息

Digestion. 2011;83(4):283-7. doi: 10.1159/000320714. Epub 2011 Feb 1.

DOI:10.1159/000320714
PMID:21282953
Abstract

BACKGROUND

Celiac disease (CD) is a prevalent condition with a broad spectrum of presentations requiring a lifelong gluten-free diet (GFD). Our aims were to examine the presentation and adherence to a GFD as well as the adequacy of follow-up of children diagnosed with CD at a tertiary referral center.

METHODS

A retrospective electronic chart review of pediatric patients suspected of CD (n = 581) who were seen at our institute between January 1999 and December 2008 was performed.

RESULTS

387 children were diagnosed with CD (F/M ratio of 1.54, median age: 6.25 years). Presenting symptoms were iron deficiency anemia (n = 82, 34%), short stature (n = 59, 24.5%) and abdominal pain (n = 59, 24.5%). In 63 patients (16.3%) an associated autoimmune disease was recorded. Only 42.7% of the patients (165/387) had regular out-patient gastroenterologist visits; 22% (86/387) were followed by their primary care physician. Over 35% (136/387) were completely lost to follow-up. Negative serology on follow-up was present in 91% of the CD patients(150/165) followed at our center in comparison to 70% (60/86) in those followed up by their primary physician (p = 0.0002).

CONCLUSIONS

At least in our referral center, follow-up of children diagnosed with CD is far from satisfactory. Initiatives aimed at improving adherence to regular follow-up are needed as this intervention is associated with a significant increase in patient compliance with a long-term GFD.

摘要

背景

乳糜泻(CD)是一种常见疾病,表现多样,需要终生无麸质饮食(GFD)。我们的目的是研究在三级转诊中心诊断为 CD 的儿童的表现、GFD 依从性以及随访的充分性。

方法

对 1999 年 1 月至 2008 年 12 月期间在我院就诊的疑似 CD 的儿科患者(n=581)进行回顾性电子病历审查。

结果

387 名儿童被诊断为 CD(男女比例为 1.54,中位年龄:6.25 岁)。首发症状为缺铁性贫血(n=82,34%)、身材矮小(n=59,24.5%)和腹痛(n=59,24.5%)。63 例(16.3%)记录到合并自身免疫性疾病。只有 42.7%(165/387)的患者定期接受门诊胃肠病医生就诊;22%(86/387)由初级保健医生随访。超过 35%(136/387)的患者完全失去随访。与在我们中心随访的 CD 患者(150/165,91%)相比,在初级医生处随访的患者(60/86,70%)的随访时血清学检查呈阴性(p=0.0002)。

结论

至少在我们的转诊中心,对诊断为 CD 的儿童的随访远不理想。需要采取措施提高对定期随访的依从性,因为这一干预措施与患者对长期 GFD 的依从性显著提高有关。

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