Challenges and opportunities in transitional care process in Behçet’s syndrome

IF 3.1 3区 医学 Q1 MEDICINE, GENERAL & INTERNAL
Federica Di Cianni, Maria Vincenza Mastrolia, Edoardo Biancalana, Diana Marinello, Giacomo Emmi, Marta Mosca, Gabriele Simonini, Rosaria Talarico
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Abstract

Behçet’s syndrome (BS) is a rare chronic multi-systemic inflammatory disorder that usually involves adults between third and fourth decades of life, while pediatric and juvenile onset are relatively rare. BS young patients (YP) often develop a full-blown disease late after onset, requiring careful diagnostic workup and regular follow-up while they grow up. In this regard, the purpose of transitional programs is to ensure continuous high-quality care to YP with chronic conditions, providing them with the skills necessary to become independent and empowered adults able to chronically self-manage their disease. EULAR/PReS released the first set of standards and recommendations for transitional care (TC) of YP with juvenile-onset rheumatic diseases, but the appropriate timing for transition, the tools to evaluate patients’ readiness, and indicators of transition plans effectiveness still need to be identified. Although little is known regarding TC in BS, it is easy to assume that BS YP will benefit from developmentally and disease-specifically appropriate transition plans, which may promote continuity of care, improve perceived quality of life and prevent poor disease outcomes. This perspective article discusses the key concepts and the goals of TC, addressing the potential challenges and opportunities of TC for YP with BS in clinical practice.
贝赫切特综合征过渡护理过程中的挑战与机遇
贝赫切特综合征(BS)是一种罕见的慢性多系统炎症性疾病,通常发生在三四十岁的成年人身上,而儿童和青少年发病则相对罕见。白塞氏综合征的年轻患者(YP)往往在发病后很晚才出现全面的疾病,需要在成长过程中进行仔细的诊断和定期随访。在这方面,过渡性项目的目的是确保为患有慢性疾病的青年患者提供持续的高质量护理,为他们提供必要的技能,使他们成为能够长期自我管理疾病的独立、有能力的成年人。EULAR/PReS发布了第一套针对青少年风湿病患者过渡性护理(TC)的标准和建议,但过渡性护理的适当时机、评估患者准备情况的工具以及过渡性护理计划有效性的指标仍有待确定。尽管人们对 BS 患者的过渡治疗知之甚少,但不难推测,BS 青少年患者将受益于适合其发育和疾病特点的过渡治疗计划,这可能会促进护理的连续性、改善患者的生活质量并预防不良的疾病预后。本视角文章讨论了过渡计划的关键概念和目标,探讨了在临床实践中为患有 BS 的青少年提供过渡计划可能带来的挑战和机遇。
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来源期刊
Frontiers in Medicine
Frontiers in Medicine Medicine-General Medicine
CiteScore
5.10
自引率
5.10%
发文量
3710
审稿时长
12 weeks
期刊介绍: Frontiers in Medicine publishes rigorously peer-reviewed research linking basic research to clinical practice and patient care, as well as translating scientific advances into new therapies and diagnostic tools. Led by an outstanding Editorial Board of international experts, this multidisciplinary open-access journal is at the forefront of disseminating and communicating scientific knowledge and impactful discoveries to researchers, academics, clinicians and the public worldwide. In addition to papers that provide a link between basic research and clinical practice, a particular emphasis is given to studies that are directly relevant to patient care. In this spirit, the journal publishes the latest research results and medical knowledge that facilitate the translation of scientific advances into new therapies or diagnostic tools. The full listing of the Specialty Sections represented by Frontiers in Medicine is as listed below. As well as the established medical disciplines, Frontiers in Medicine is launching new sections that together will facilitate - the use of patient-reported outcomes under real world conditions - the exploitation of big data and the use of novel information and communication tools in the assessment of new medicines - the scientific bases for guidelines and decisions from regulatory authorities - access to medicinal products and medical devices worldwide - addressing the grand health challenges around the world
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