Study Protocol of the International Spinal Cord Injury (InSCI) Community Survey

Mirja H. Gross-Hemmi; Marcel W. M. Post; Cristina Ehrmann; Christine Fekete; Nazirah Hasnan; James W. Middleton; Jan D. Reinhardt; Vegard Strom; Gerold Stucki; Int Spinal Cord Injury Community

doi:10.1097/PHM.0000000000000647

Study Protocol of the International Spinal Cord Injury (InSCI) Community Survey

Mirja H. Gross-Hemmi^*, Marcel W. M. Post, Cristina Ehrmann, Christine Fekete, Nazirah Hasnan, James W. Middleton, Jan D. Reinhardt, Vegard Strom, Gerold Stucki, Int Spinal Cord Injury Community

^*Corresponding author for this work

EXtremities Pain Active lifestyle aNd Disability (EXPAND)

Research output: Contribution to journal › Article › Academic › peer-review

86 Citations (Scopus)

Abstract

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.

Original language	English
Pages (from-to)	S23-S34
Number of pages	12
Journal	American Journal of Physical Medicine and Rehabilitation
Volume	96
Issue number	2
DOIs	https://doi.org/10.1097/PHM.0000000000000647
Publication status	Published - Feb-2017

Keywords

Spinal Cord Injuries
Community Survey
International Classification of Functioning
Disability
Health
PSYCHOMETRIC PROPERTIES
PERSONAL FACTORS
SHORT-FORM
HEALTH
PARTICIPATION
SCALE
CLASSIFICATION
DISABILITY
IMPUTATION
VALIDITY

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Gross-Hemmi, M. H., Post, M. W. M., Ehrmann, C., Fekete, C., Hasnan, N., Middleton, J. W., Reinhardt, J. D., Strom, V., Stucki, G., & Int Spinal Cord Injury Community (2017). Study Protocol of the International Spinal Cord Injury (InSCI) Community Survey. American Journal of Physical Medicine and Rehabilitation, 96(2), S23-S34. https://doi.org/10.1097/PHM.0000000000000647

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abstract = "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.",

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author = "Gross-Hemmi, {Mirja H.} and Post, {Marcel W. M.} and Cristina Ehrmann and Christine Fekete and Nazirah Hasnan and Middleton, {James W.} and Reinhardt, {Jan D.} and Vegard Strom and Gerold Stucki and {Int Spinal Cord Injury Community}",

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N2 - 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.

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KW - SCALE

KW - CLASSIFICATION

KW - DISABILITY

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Study Protocol of the International Spinal Cord Injury (InSCI) Community Survey

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