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患有自身炎症性疾病的儿科患者的转变:神话的另一个版本。

Transition of pediatric patients with an Auto-inflammatory Disease: an alternative version of the myth.

作者信息

Pratsidou-Gertsi Polyxeni

机构信息

Pediatric Immunology and Rheumatology Referral Center, First Dept. of Pediatrics, Aristotle University, Hippokration Hospital, Thessaloniki, Greece.

出版信息

Mediterr J Rheumatol. 2018 Sep 27;29(3):156-162. doi: 10.31138/mjr.29.3.156. eCollection 2018 Sep.

Abstract

Progress in the pediatric Auto-inflammatory Diseases (AIDs) has led to improved long-term outcome and the increased pool of pediatric patients who require lifelong monitoring. Implementation of a successful stepwise transition in patients with AIDs denotes the presence of a structured flexible and individualized policy that ensues the stepwise move from family-based pediatric care to adult patient one. This process aims to equip the young adult with self-management skills and the ability to enjoy life even under the burden of a chronic disease. Transition, thus, is a continuously evolutionary process that assists adolescents and young adults with an AID to move into a future that their predecessors with similar diseases never needed to experience. This review, using the myth of Daedalus and Icarus as a scaffold, presents the contemporary profile of the adolescent patient, comments on the evidence derived from Transition recommendations, and emphasizes the need of periodic quantitative assessments to assess the efficacy of the Transition plan. Upon the completion of the transfer to the Adult Center, monitoring of the patient's active participation will support his/her engagement in the new setting.

摘要

儿童自身炎症性疾病(AIDs)的进展改善了长期预后,使得需要终身监测的儿科患者数量增加。成功实施AIDs患者的逐步过渡意味着存在一种结构化、灵活且个性化的政策,确保从以家庭为基础的儿科护理逐步过渡到成人患者护理。这一过程旨在使年轻成年人具备自我管理技能,并即使在慢性病负担下也能享受生活的能力。因此,过渡是一个持续演进的过程,帮助患有AIDs的青少年和年轻成年人迈向他们患有类似疾病的前辈从未经历过的未来。本综述以代达罗斯和伊卡洛斯的神话为框架,呈现了青少年患者的当代概况,对从过渡建议中得出的证据进行了评论,并强调了定期定量评估以评估过渡计划有效性的必要性。在转移到成人中心完成后,对患者积极参与情况的监测将支持其融入新环境。

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