Fraser Robert, Ehde Dawn, Amtmann Dagmar, Verrall Aimee, Johnson Kurt L, Johnson Erica, Kraft George H
Department of Rehabilitation Medicine, University of Washington School of Medicine, Seattle, WA, USA (RF, DE, DA, AV, KLJ, GHK); and Department of Rehabilitation Counseling, Western Washington University, Bellingham, WA, USA (EJ).
Int J MS Care. 2013 Summer;15(2):99-106. doi: 10.7224/1537-2073.2012-044.
People with multiple sclerosis (MS) must manage the day-to-day effects of the disease on their lives. Self-management interventions may be helpful in this challenge. An international, multidisciplinary consensus conference was held on November 15, 2010, by the University of Washington's Rehabilitation Research and Training Center for Multiple Sclerosis (MS RRTC), with funding from the Consortium of Multiple Sclerosis Centers (CMSC) and the National Institute on Disability and Rehabilitation Research (NIDRR), to discuss the concept of self-management for people with MS. The specific goals of the consensus conference were as follows: 1) review the current research on self-management and related issues in chronic disability and specifically in MS; 2) review optimal research methodologies, outcome measurement tools, program planning frameworks, and dissemination strategies for self-management research; and 3) establish recommendations on the next steps necessary to develop, adapt, and test self-management interventions for people with MS. The consensus conference and this document are the initial steps toward achieving the stated goals. Participants in the consensus conference concluded that it is necessary to: 1) define an empirically based conceptual model of self-management for people with MS; 2) establish reliable and valid self-management outcome measures; 3) use best practices to validate models of self-management interventions; and 4) plan dissemination and knowledge translation of interventions once their effectiveness is established.
患有多发性硬化症（MS）的人必须应对该疾病对其生活产生的日常影响。自我管理干预措施可能有助于应对这一挑战。2010年11月15日，华盛顿大学多发性硬化症康复研究与培训中心（MS RRTC）召开了一次国际多学科共识会议，该会议由多发性硬化症中心联盟（CMSC）和国家残疾与康复研究所（NIDRR）资助，旨在讨论MS患者的自我管理概念。共识会议的具体目标如下：1）回顾当前关于慢性残疾尤其是MS患者自我管理及相关问题的研究；2）回顾自我管理研究的最佳研究方法、结果测量工具、项目规划框架和传播策略；3）就开发、调整和测试针对MS患者的自我管理干预措施所需的后续步骤提出建议。共识会议及本文件是朝着实现既定目标迈出的初步步骤。共识会议的参与者得出结论，有必要：1）为MS患者定义一个基于实证的自我管理概念模型；2）建立可靠且有效的自我管理结果测量方法；3）采用最佳实践来验证自我管理干预模型；4）一旦干预措施的有效性得到确立，规划其传播和知识转化。
