开发用于严重多发性硬化症患者及其照护者的长期跨部门病例和照护管理手册。
Development of a Long-Term Cross-Sectoral Case and Care Management Manual for Patients With Severe Multiple Sclerosis and Their Caregivers.
机构信息
KOKOS-MS trial group: Anne Müller, is from the Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany. Beatrix Münzberg, is from the Department of Neurology, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany. Clemens Warnke, is from the Department of Neurology, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany. Dirk Müller, is from the Faculty of Medicine and University Hospital, Institute for Health Economics and Clinical Epidemiology (IGKE), University of Cologne, Cologne, Germany. Dorthe Hobus, is from the Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany. Gundula Palmbach, is from the Faculty of Medicine and University Hospital, Clinical Trials Centre Cologne (CTCC), University of Cologne, Cologne, Germany. Heidrun Golla, is from the Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany. Isabel Franke, is from the Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany. Kim Dillen, is from the Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany. Martin Hellmich, is from the Faculty of Medicine and University Hospital, Institute of Medical Statistics and Computational Biology (IMSB), University of Cologne, Cologne, Germany. Monika Höveler, is from the Department of Neurology, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany. Solveig Ungeheuer, is from the Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany. Sophia Kochs, is from the Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany. Veronika Dunkl, is from the Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany. Yasemin Göreci, is from the Department of Neurology, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany.
Anne Müller, MA , studied social work (BA) and rehabilitation sciences (MA). She is currently working as a researcher and case manager in the COCOS-MS study at the Department of Palliative Medicine of the University Hospital Cologne and perusing her PhD studies in health sciences at the University of Cologne.
出版信息
Prof Case Manag. 2023;28(4):183-193. doi: 10.1097/NCM.0000000000000608. Epub 2022 Dec 14.
PURPOSE/OBJECTIVES: Care and case management (CCM) aims to provide optimal care for patients and their caregivers on an individual and superordinate level of health care providers and authorities. To facilitate a clear and systematic CCM process as part of a clinical study intervention, a semistructured manual is the prerequisite.
PRIMARY PRACTICE SETTINGS
The ongoing COCOS-MS (Communication, Coordination and Security for People with Multiple Sclerosis) study is a randomized controlled Phase II clinical intervention study. The CCM manual is being tested on the intervention group consisting of severely affected individuals with multiple sclerosis (MS; Expanded Disability Status Scale [EDSS] >5) and their caregivers receiving CCM for 12 months in addition to standard care. The intervention comprises monthly personal visits and weekly telephone calls during which the CCM manual is applied.
FINDINGS/CONCLUSIONS: The CCM manual has been developed on the basis of previous literature and well-established questionnaires following theoretical aspects and prior scientific work covering individual domains of life of people with MS. Within the COCOS-MS study, its feasibility is being tested meticulously. It allows for a standardized assessment while being tailored to the individual. At the end of the intervention period, it will be analyzed statistically and qualitatively. Consequently, conclusions can be drawn as to whether the CCM manual is feasible or has to be adapted for use in standard care after analyzation.
IMPLICATIONS FOR CASE MANAGEMENT PRACTICE
The CCM manual serves as a tool for the continuous, long-term, cross-sectoral care for patients suffering from severe MS and their caregivers. The manual provides guidance in adequately addressing patients' complex symptoms, problems, and needs, as well as assessing existing resources both at the individual patient level and at a superordinate level.
目的/目标：护理和病例管理（CCM）旨在为患者及其护理人员提供个体和上级医疗保健提供者和当局的最佳护理。为了促进临床研究干预措施中明确和系统的 CCM 流程，半结构化手册是先决条件。
主要实践场所
正在进行的 COCOS-MS（多发性硬化症患者的沟通、协调和安全）研究是一项随机对照的 II 期临床干预研究。CCM 手册正在对干预组进行测试，干预组包括严重多发性硬化症患者（EDSS>5）及其护理人员，他们在标准护理之外接受 12 个月的 CCM。干预包括每月进行个人访问和每周进行电话访问，在此期间应用 CCM 手册。
发现/结论：CCM 手册是在之前的文献和既定问卷的基础上，根据理论方面和之前涵盖多发性硬化症患者生活各个领域的科学工作开发的。在 COCOS-MS 研究中，正在仔细测试其可行性。它允许进行标准化评估，同时针对个人进行定制。在干预结束时，将对其进行统计和定性分析。因此，可以得出结论，CCM 手册是否可行，或者在分析后是否需要适应标准护理。
对病例管理实践的影响
CCM 手册是为患有严重多发性硬化症的患者及其护理人员提供持续、长期、跨部门护理的工具。该手册为充分解决患者的复杂症状、问题和需求提供了指导，并评估了个体患者层面和上级层面的现有资源。
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