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Study Protocol of the International Spinal Cord Injury (InSCI) Community Survey
Mirja H Gross-Hemmi1, Marcel W M Post, Cristina Ehrmann
1From 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).
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.
