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Updated: Jul 26, 2025

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罕见病患者使用牙科护理的决定因素:定性探索
Lisa Friedlander1,2,3,4,5,6, Ariane Berdal7,8,9, Valérie Cormier-Daire10
1Université Paris Cité, Laboratoire ECEVE INSERM, UMR1123, Hôpital Robert Debré, Paris, France. lisa.friedlander@aphp.fr.
BMC oral health
|June 22, 2023
概括
对于患有罕见疾病的患者来说,获得牙科护理是具有挑战性的,主要是由于智力障碍而不是这种疾病的罕见性. 解决这些障碍对于改善口腔健康结果至关重要.
科学领域:
- 口腔健康研究 口腔健康研究
- 罕见疾病是一种罕见的疾病.
- 智力障碍 智力障碍是一种智力障碍.
背景情况:
- 口腔健康是整体健康的组成部分,影响生理功能和社会相互作用.
- 患有罕见疾病的患者可能难以获得专门的牙科护理.
- 认知和智力障碍可能会进一步使这些患者的口腔健康管理变得复杂.
研究的目的:
- 调查罕见病患者获得牙科护理的挑战.
- 在这个人群中确定维持口腔健康的主要障碍.
主要方法:
- 定性描述性研究设计.
- 与患者和/或护理人员进行半结构面试.
- 对面试成绩单进行主题分析,直到数据和.
主要成果:
- 智力障碍对获得牙科护理的障碍比罕见疾病本身更大.
- 口腔疾病被认为是保持口腔健康的障碍.
- 该研究包括29名年龄在7-24岁之间的患者,其中15人患有智力延迟.
结论:
- 汇集跨专业知识可以显著改善罕见病患者的口腔健康.
- 跨学科的护理和国家公共卫生倡议对于应对这些挑战至关重要.
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