Fekete Christine, Post Marcel W M, Bickenbach Jerome, Middleton James, Prodinger Birgit, Selb Melissa, Stucki Gerold
From the Swiss Paraplegic Research, Guido A. Zäch Institute, Nottwil, Switzerland (CF, MWMP, JB, BP, MS, 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 Health Sciences and Health Policy, University of Lucerne, Lucerne, Switzerland (JB, BP, GS); ICF Research Branch, Guido A. Zäch Institute, Nottwil, Switzerland, a cooperation partner within the WHO Collaborating Centre for the Family of International Classifications (at DIMDI) (JB, BP, MS, GS); and John Walsh Centre for Rehabilitation Research, Kolling Institute, Northern Sydney Local Health District and Sydney Medical School Northern, University of Sydney, Sydney, Australia (JM).
Am J Phys Med Rehabil. 2017 Feb;96(2 Suppl 1):S5-S16. doi: 10.1097/PHM.0000000000000622.
The International Spinal Cord Injury (InSCI) community survey has been developed to collect internationally comparable data on the lived experience of persons with spinal cord injury (SCI) in all 6 WHO regions. The InSCI survey provides a crucial first step to generate evidence on functioning, health maintenance, and subjective well-being in persons with SCI globally. A major challenge in setting up the InSCI community survey was to develop a data model and questionnaire that comprehensively captures what matters to people and, at the same time, is feasible and parsimonious in terms of participant's burden. This paper outlines the components of the InSCI data model and presents the question selection to operationalize the data model along the 4 guiding principles of efficiency, feasibility, comparability, and truth and discrimination. The data model consists of 6 components operationalized with 125 questions including functioning (n = 28 body functions and structures; n = 42 activities and participation), contextual factors (n = 26 environmental; n = 19 personal factors), lesion characteristics (n = 2), and appraisal of health and well-being (n = 8). The InSCI questionnaire presents an efficient and feasible solution with satisfying comparability to other populations; however, its validity and reliability still needs to be confirmed.
国际脊髓损伤（InSCI）社区调查旨在收集世界卫生组织所有6个区域脊髓损伤（SCI）患者生活经历的国际可比数据。InSCI调查是生成全球SCI患者功能、健康维持和主观幸福感证据的关键第一步。开展InSCI社区调查的一个主要挑战是开发一个数据模型和问卷，既能全面涵盖对人们重要的事项，又能在参与者负担方面切实可行且简洁明了。本文概述了InSCI数据模型的组成部分，并根据效率、可行性、可比性以及真实性和区分性这4项指导原则，介绍了为实施数据模型而进行的问题选择。数据模型由6个组成部分构成，通过125个问题来实施，包括功能（28项身体功能和结构；42项活动和参与）、背景因素（26项环境因素；19项个人因素）、损伤特征（2项）以及健康和幸福感评估（8项）。InSCI问卷提供了一种高效可行的解决方案，与其他人群具有令人满意的可比性；然而，其有效性和可靠性仍需得到证实。
