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镰状细胞病(SCD)的转变:德国共识推荐

Transition in Sickle Cell Disease (SCD): A German Consensus Recommendation.

作者信息

Alashkar Ferras, Aramayo-Singelmann Carmen, Böll Janine, Hoferer Annette, Jarisch Andrea, Kamal Haytham, Oevermann Lena, Schwarz Michaela, Cario Holger

机构信息

Department of Hematology and Stem Cell Transplantation, West German Cancer Center, University Hospital Essen, University of Duisburg-Essen, 45147 Essen, Germany.

Department of Pediatrics III, University Children's Hospital Essen, University of Duisburg-Essen, 45147 Essen, Germany.

出版信息

J Pers Med. 2022 Jul 17;12(7):1156. doi: 10.3390/jpm12071156.

Abstract

Sickle cell disease (SCD) is considered a rare disease in Germany. Due to the increasing prevalence, the acute and chronic morbidities associated with the disease and the sharp increase in the mortality rate of young adults, a need-based transition structure for patients with SCD in Germany is explicitly required. This is the first multicenter German consensus statement addressing the importance of implementing a standardized transition guideline that allows adolescents and young adults to safely transition from pediatric to adult care. Early identification of medical needs and intervention remains important in the context of chronic diseases. Effective measures can improve health care in general, as they lead to a reduction in disease and the consequential economic burden. It is noteworthy that improving structural barriers remains a key challenge even in highly developed countries such as Germany. Inclusion of these transition services for patients with SCD into the regular care of chronically ill adolescents and young adults should be ensured, as well as the coverage of costs associated with a structured transition process.

摘要

镰状细胞病(SCD)在德国被视为一种罕见病。由于其患病率不断上升、与该疾病相关的急慢性发病率以及年轻成年人死亡率的急剧增加,德国明确需要为SCD患者建立一个基于需求的过渡结构。这是德国第一份多中心共识声明,阐述了实施标准化过渡指南的重要性,该指南能让青少年和年轻成年人安全地从儿科护理过渡到成人护理。在慢性病背景下,早期识别医疗需求并进行干预仍然很重要。有效的措施总体上可以改善医疗保健,因为它们能减少疾病以及随之而来的经济负担。值得注意的是,即使在德国这样的高度发达国家,改善结构性障碍仍然是一项关键挑战。应确保将这些针对SCD患者的过渡服务纳入慢性病青少年和年轻成年人的常规护理中,以及涵盖结构化过渡过程相关的费用。

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本文引用的文献

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A program of transition to adult care for sickle cell disease.镰状细胞病成人护理过渡计划。
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