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乳糜泻:影响过渡的因素及向成人医疗保健过渡的实用工具。

Coeliac disease: factors affecting the transition and a practical tool for the transition to adult healthcare.

作者信息

Zingone Fabiana, Massa Serana, Malamisura Basilio, Pisano Pasquale, Ciacci Carolina

机构信息

Department of Surgery, Oncology and Gastroenterology, University of Padua, Padua, Italy.

Department of Medicine, University of Salerno, Salerno, Italy.

出版信息

United European Gastroenterol J. 2018 Nov;6(9):1356-1362. doi: 10.1177/2050640618787651. Epub 2018 Jul 3.

Abstract

BACKGROUND

As of now, no established model for the transition from childhood to adulthood in coeliac disease exists. We aim to describe the dietary compliance and the quality of life of a population of young coeliac disease patients around transition age and to develop a practical tool (TRANSIT-CeD disk) which can be used during the transition process effectively to transmit young adults to the adult healthcare giver.

METHODS

We consecutively recruited all coeliac disease patients with a paediatric diagnosis (≤16 years) and aged between 9 and 20 years at the time of the study. The patients were asked to answer some questions concerning their adherence to a gluten-free diet, knowledge about coeliac disease, relationship with healthcare givers and quality of life.

RESULTS

We included 58 subjects, mean age 14.5 ± 3.6 years, of which 62% were girls/young women. We observed that dietary compliance was independently and positively related to age at diagnosis and coeliac disease knowledge, while quality of life was only independently and positively related to coeliac disease knowledge.

CONCLUSION

A good coeliac disease knowledge is positively related to dietary compliance and quality of life. With the help of the TRANSIT-CeD disk we proposed, paediatricians and adult gastroenterologists can follow the patients during the transition and identify some points to work on.

摘要

背景

目前,尚无成熟的乳糜泻从儿童期到成年期过渡的模型。我们旨在描述处于过渡年龄的年轻乳糜泻患者群体的饮食依从性和生活质量,并开发一种实用工具(TRANSIT-CeD盘),可在过渡过程中有效使用,将年轻患者交接给成人医疗服务提供者。

方法

我们连续招募了所有儿科诊断为乳糜泻(≤16岁)且在研究时年龄在9至20岁之间的患者。要求患者回答一些关于他们对无麸质饮食的依从性、对乳糜泻的了解、与医疗服务提供者的关系以及生活质量的问题。

结果

我们纳入了58名受试者,平均年龄14.5±3.6岁,其中62%为女孩/年轻女性。我们观察到饮食依从性与诊断时的年龄和乳糜泻知识呈独立正相关,而生活质量仅与乳糜泻知识呈独立正相关。

结论

良好的乳糜泻知识与饮食依从性和生活质量呈正相关。借助我们提出的TRANSIT-CeD盘,儿科医生和成人胃肠病学家可以在过渡期间跟踪患者,并确定一些需要改进的方面。

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