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Transition of patients with primary ciliary dyskinesia
被引:1
|作者:
Schmalstieg, Christian
[1
]
Omran, Heymut
[1
]
机构:
[1] Univ Klinikum Munster, Allgemeine Padiatr, Klin Kinder & Jugendmed, Albert Schweitzer Campus 1, D-48149 Munster, Germany
来源:
关键词:
Motile ciliopathies;
Rare diseases;
Interdisciplinarity;
Therapeutic network;
Quality of care;
D O I:
10.1007/s10405-020-00369-8
中图分类号:
R56 [呼吸系及胸部疾病];
学科分类号:
摘要:
Primary ciliary dyskinesia (PCD) is a hereditary disease that belongs to the motile ciliopathies. In addition to the obligatory chronic disturbance of the mucociliary clearance of the upper and lower airways, other organ manifestations regularly occur. Patients with this rare disease have multidisciplinary care and treatment needs. This creates a complex therapeutic network. In this article, we describe the role of the individual network partners and the aspects that require special attention during transition. Due to the changes in personnel and content during transition, there is a high risk that the quality of care for patients will suffer. Our checklist provided here should help to prevent this and to guarantee a successful transition.
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页码:86 / 96
页数:11
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