PDF(Pubmed)
Abstract：
OBJECTIVE: An increasing number of patients with Duchenne muscular dystrophy (DMD) now have access to improved standard of care and disease modifying treatments, which improve the clinical course of DMD and extend life expectancy beyond 30 years of age. A key issue for adolescent DMD patients is the transition from paediatric- to adult-oriented healthcare. Adolescents and adults with DMD have unique but highly complex healthcare needs associated with long-term steroid use, orthopaedic, respiratory, cardiac, psychological, and gastrointestinal problems meaning that a comprehensive transition process is required. A sub-optimal transition into adult care can have disruptive and deleterious consequences for a patient\'s long-term care. This paper details the results of a consensus amongst clinicians on transitioning adolescent DMD patients from paediatric to adult neurologists that can act as a guide to best practice to ensure patients have continuous comprehensive care at every stage of their journey.
METHODS: The consensus was derived using the Delphi methodology. Fifty-three statements were developed by a Steering Group (the authors of this paper) covering seven topics: Define the goals of transition, Preparing the patient, carers/parents and the adult centre, The transition process at the paediatric centre, The multidisciplinary transition summary - Principles, The multidisciplinary transition summary - Content, First visit in the adult centre, Evaluation of transition. The statements were shared with paediatric and adult neurologists across Central Eastern Europe (CEE) as a survey requesting their level of agreement with each statement.
RESULTS: Data from 60 responders (54 full responses and six partial responses) were included in the data set analysis. A consensus was agreed across 100% of the statements.
CONCLUSIONS: It is hoped that the findings of this survey which sets out agreed best practice statements, and the transfer template documents developed, will be widely used and so facilitate an effective transition from paediatric to adult care for adolescents with DMD.
METHODS: The consensus was derived using the Delphi methodology. Fifty-three statements were developed by a Steering Group (the authors of this paper) covering seven topics: Define the goals of transition, Preparing the patient, carers/parents and the adult centre, The transition process at the paediatric centre, The multidisciplinary transition summary - Principles, The multidisciplinary transition summary - Content, First visit in the adult centre, Evaluation of transition. The statements were shared with paediatric and adult neurologists across Central Eastern Europe (CEE) as a survey requesting their level of agreement with each statement.
RESULTS: Data from 60 responders (54 full responses and six partial responses) were included in the data set analysis. A consensus was agreed across 100% of the statements.
CONCLUSIONS: It is hoped that the findings of this survey which sets out agreed best practice statements, and the transfer template documents developed, will be widely used and so facilitate an effective transition from paediatric to adult care for adolescents with DMD.
摘要：
目的：现在越来越多的Duchenne型肌营养不良症（DMD）患者可以获得改善的护理标准和疾病改善治疗，这改善了DMD的临床病程，并延长了30岁以上的预期寿命。青少年DMD患者的一个关键问题是从以医学为导向的医疗保健过渡到以成人为导向的医疗保健。患有DMD的青少年和成年人有独特但高度复杂的医疗保健需求，与长期使用类固醇相关。骨科,呼吸,心脏,心理,和胃肠道问题意味着需要一个全面的过渡过程。向成人护理的次优过渡可能会对患者的长期护理产生破坏性和有害的后果。本文详细介绍了临床医生关于将青少年DMD患者从儿科过渡到成人神经科医生的共识结果，该共识可以作为最佳实践的指南，以确保患者在旅程的每个阶段都能获得持续的全面护理。
方法：使用德尔菲法得出共识。指导小组（本文的作者）制定了53个声明，涵盖七个主题：定义过渡目标，准备病人，照顾者/父母和成人中心，儿科中心的过渡过程，多学科过渡摘要-原则，多学科过渡摘要-内容，首次访问成人中心，对转型的评价。这些声明与中东欧（CEE）的儿科和成人神经科医生分享，作为一项调查，要求他们对每个声明的同意程度。
结果：来自60名应答者（54名完全应答和6名部分应答）的数据包括在数据集分析中。在100％的声明中达成了共识。
结论：希望本次调查的结果列出了商定的最佳实践声明，和开发的转移模板文件，将被广泛使用，从而促进DMD青少年从儿科护理到成人护理的有效过渡。
方法：使用德尔菲法得出共识。指导小组（本文的作者）制定了53个声明，涵盖七个主题：定义过渡目标，准备病人，照顾者/父母和成人中心，儿科中心的过渡过程，多学科过渡摘要-原则，多学科过渡摘要-内容，首次访问成人中心，对转型的评价。这些声明与中东欧（CEE）的儿科和成人神经科医生分享，作为一项调查，要求他们对每个声明的同意程度。
结果：来自60名应答者（54名完全应答和6名部分应答）的数据包括在数据集分析中。在100％的声明中达成了共识。
结论：希望本次调查的结果列出了商定的最佳实践声明，和开发的转移模板文件，将被广泛使用，从而促进DMD青少年从儿科护理到成人护理的有效过渡。
