儿童性发育异常的诊断——在Empower-DSD研究中开发用于结构化诊断和信息管理计划的新工具
Diagnosis of DSD in Children-Development of New Tools for a Structured Diagnostic and Information Management Program within the Empower-DSD Study.
作者信息
Wechsung Katja, Marshall Louise, Jürgensen Martina, Neumann Uta
机构信息
Department for Pediatric Endocrinology and Diabetology, Center for Chronic Sick Children, Charité-Universitätsmedizin Berlin, Augustenburger Platz 1, 13353 Berlin, Germany.
Division of Pediatric Endocrinology and Diabetes, Department of Pediatrics and Adolescent Medicine, University of Lübeck, Ratzeburger Allee 160, 23538 Luebeck, Germany.
出版信息
J Clin Med. 2022 Jul 3;11(13):3859. doi: 10.3390/jcm11133859.
BACKGROUND
Current recommendations define a structured diagnostic process, transparent information, and psychosocial support by a specialized, multi-professional team as central in the care for children and adolescents with genital variations and a suspected difference of sex development (DSD). The active involvement of the child and their parents in shared decision-making should result in an individualized care plan. So far, this process has not been standardized.
METHODS
Within the Empower-DSD study, a team of professionals and representatives of patient advocacy groups developed a new diagnostic and information management program based on current recommendations and existing patient information.
RESULTS
The information management defines and standardizes generic care elements for the first weeks after a suspected DSD diagnosis. Three different tools were developed: a guideline for the specialized multiprofessional team, a personal health record and information kit for the child with DSD and their family, and a booklet for medical staff not specialized in DSD.
CONCLUSIONS
The new information management offers guidance for patients and professionals during the first weeks after a DSD diagnosis is suspected. The developed tools' evaluation will provide further insight into the diagnostic and information-sharing process as well as into all of the involved stakeholders' needs.
背景
当前建议将结构化诊断流程、透明信息以及由专业多学科团队提供的心理社会支持定义为对患有生殖器变异和疑似性发育差异（DSD）的儿童和青少年进行护理的核心内容。儿童及其父母积极参与共同决策应能产生个性化护理计划。到目前为止，这一过程尚未标准化。
方法
在“赋权-DSD”研究中，一组专业人员和患者权益倡导组织的代表基于当前建议和现有患者信息，制定了一个新的诊断和信息管理项目。
结果
信息管理为疑似DSD诊断后的头几周定义并规范了通用护理要素。开发了三种不同的工具：针对专业多学科团队的指南、为患有DSD的儿童及其家庭准备的个人健康记录和信息包，以及为非DSD专业的医务人员准备的手册。
结论
新的信息管理为疑似DSD诊断后的头几周为患者和专业人员提供了指导。对所开发工具的评估将进一步深入了解诊断和信息共享过程以及所有相关利益攸关方的需求。
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