国际脊髓损伤（InSCI）社区调查研究方案。
Study Protocol of the International Spinal Cord Injury (InSCI) Community Survey.
作者信息
Gross-Hemmi Mirja H, Post Marcel W M, Ehrmann Cristina, Fekete Christine, Hasnan Nazirah, Middleton James W, Reinhardt Jan D, Strøm Vegard, Stucki Gerold
机构信息
From the Swiss Paraplegic Research, Guido A. Zäch Institute, Nottwil, Switzerland (MHG-H, MWMP, CE, CF, JDR, GS); University of Groningen, University Medical Center Groningen, Department of Rehabilitation Medicine, Center for Rehabilitation, Groningen, the Netherlands (MWMP); Brain Center Rudolf Magnus and Center of Excellence in Rehabilitation Medicine, University Medical Center Utrecht and De Hoogstraat, Utrecht, the Netherlands (MWMP); Department of Rehabilitation Medicine, University of Malaya, Kuala Lumpur, Malaysia (NH); John Walsh Centre for Rehabilitation Research, Kolling Institute, Northern Sydney Local Health District and Sydney Medical School Northern, University of Sydney, Sydney, Australia (JWM); Institute for Disaster Relief and Reconstruction, Sichuan University and Hongkong Polytechnic University, Sichuan, Chengdu, China (JDR); Department of Health Sciences and Health Policy, University of Lucerne, Lucerne, Switzerland (JDR, GS); Sunnaas Rehabilitation Hospital, Nesoddtangen, Norway (VS); and ICF Research Branch (a cooperation partner within the WHO Collaborating Centre for the Family of International Classifications at the German Institute of Medical Documentation and Information (DIMDI)), Germany (GS).
出版信息
Am J Phys Med Rehabil. 2017 Feb;96(2 Suppl 1):S23-S34. doi: 10.1097/PHM.0000000000000647.
OBJECTIVE
The Learning Health System for Spinal Cord Injury (LHS-SCI) is an initiative embedded in the World Health Organization's (WHO's) Global Disability Plan and requires the statistical collection of data on the lived experience of persons with SCI to consequently formulate recommendations and policies. The International Spinal Cord Injury (InSCI) community survey has been developed as an initial step to gain information about the lived experience of persons with SCI within and across diverse nations.
DESIGN
InSCI is a multinational community survey based on the International Classification of Functioning, Disability and Health Core Sets for SCI and involves 28 countries from all six WHO regions. The study will be implemented in 2017. Overall aims, guiding principles on sampling strategies, data collection modes, and reminder management are described.
CONCLUSIONS
InSCI will be the first survey to be conducted simultaneously in many countries and in all six WHO world regions that identifies the factors associated with functioning, health, and well-being of persons living with SCI. Expected results of the survey will be used for the basis of conducting stakeholder dialogs for policy reforms designed to improve the functioning, health maintenance, and well-being of persons with SCI.
目的
脊髓损伤学习健康系统（LHS-SCI）是世界卫生组织（WHO）全球残疾计划中的一项倡议，需要对脊髓损伤患者的生活经历进行数据统计收集，从而制定建议和政策。国际脊髓损伤（InSCI）社区调查已作为第一步开展，旨在获取不同国家境内外脊髓损伤患者生活经历的相关信息。
设计
InSCI是一项基于脊髓损伤功能、残疾与健康国际分类核心集的多国社区调查，涉及WHO所有六个区域的28个国家。该研究将于2017年实施。文中描述了总体目标、抽样策略的指导原则、数据收集模式及提醒管理。
结论
InSCI将是首次在多个国家以及WHO所有六个世界区域同时开展的调查，用以确定与脊髓损伤患者的功能、健康和福祉相关的因素。该调查的预期结果将作为开展利益相关方对话的基础，以推动旨在改善脊髓损伤患者功能、健康维持和福祉的政策改革。
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