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大疱性表皮松解症患儿口腔健康相关生活质量的认知:一项定量与定性研究

Perception of Oral Health-Related Quality of Life in Children with Epidermolysis Bullosa: A Quantitative and Qualitative Study.

作者信息

Marty M, Chiaverini C, Milon C, Costa-Mendes L, Kémoun P, Mazereeuw-Hautier J, Joseph C

机构信息

Universite Toulouse III Paul Sabatier, Toulouse, France.

University Hospital Centre Nice, Nice, Provence-Alpes-Côte d'Azu, France.

出版信息

JDR Clin Trans Res. 2023 Oct;8(4):349-355. doi: 10.1177/23800844221118362. Epub 2022 Aug 22.

Abstract

The results of this study confirm the difficulties experienced by patients in the oral sphere. They also show that patients are able to adapt and that their demands go beyond functional rehabilitation. This work should encourage dental practitioners to be part of the overall management of the disease, involving regular checkups, preventive dental measures, and oral hygiene education. Therefore, more effective communication is required, not only between the dental and dermatological teams but also with the parents and caregivers.

摘要

这项研究的结果证实了患者在口腔领域所经历的困难。研究还表明患者能够适应,并且他们的需求超出了功能康复的范畴。这项工作应促使牙科医生参与到该疾病的整体管理中,包括定期检查、预防性牙科措施以及口腔卫生教育。因此,不仅牙科团队和皮肤科团队之间需要更有效的沟通,与家长及护理人员之间也需要。

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