For a decade, Swiss Paraplegic Research in Nottwil, Switzerland  has conducted the Swiss Spinal Cord Injury Cohort study (SwiSCI) as a research platform to enhance our capacity to improve the lives of people with SCI in Switzerland. Taking its place among other large-scale SCI cohort studies, such as the SCI model systems in the United States , the British ageing with SCI study  and the Canadian SCI community survey , SwiSCI responds to the need to collect information from a comprehensive perspective on functioning, based on the interactive, person-environment model from WHO’s International Classification of Functioning, Disability and Health . Moreover, since the 2012 and 2017 surveys use repeated measures, the study facilitates the evaluation of the combined effect of age and time since injury on the life course of people ageing with SCI. Finally, the SwiSCI study anticipates a knowledge translation and implementation strategy designed to facilitate realistic practice and policy change in Switzerland to improve the lives of persons with SCI .
SwiSCI’s comprehensive perspective aims to capture the full range of information that matters to people living with SCI in Switzerland—from features of the SCI, comorbidities and health risk factors, to basic information about the limitations in daily activities and areas of participation, modified by features of the physical, attitudinal and social environment that characterize living with SCI. The SwiSCI community survey also includes questions about usage of health services and other services and availability in order to inform recommendations for gaps in these services and improve participation of persons with SCI in all areas of life.
From the perspective of implementation and knowledge translation, SwiSCI forms part of a larger Swiss endeavor in the area of SCI called the Swiss Learning Health System, located at the University of Lucerne . Here the focus is on implementation, specifically using SwiSCI data as the evidentiary basis for identifying, and prioritizing, specific health system reforms in Switzerland in order to better serve persons with SCI. Analyses of SwiSCI data have also been instrumental in informing the Swiss Paraplegic Foundation—the largest private health foundation in Switzerland—about the effectiveness and planning of its activities in order to close the gap between what is and what should be done to provide people living with SCI with the same opportunities as those enjoyed by the general population. Finally, SwiSCI has formed the methodological model for an international effort called the International SCI Survey (InSCI) which has brought together 22 countries, from around the globe and representing low, medium, and high-resource settings, in order to identify and prioritize issues that are relevant to the lives of persons with SCI living under very different geographical, economic, and social conditions. Both SwiSCI and InSCI contribute to the implementation of the recommendations called for by the WHO report International Perspectives on Spinal Cord Injury .
The result of a collaborative effort by an interdisciplinary group of SCI researchers, the present issue offers focused studies of several salient aspects of the comprehensive perspective on SCI by combining data from both the 2012 and the 2017 SwiSCI community surveys. Besides a description of the study population characteristics and assessment of the impact of non-response bias on survey results, this collection of papers offers insights into health system service utilization, the psychosocial side of the SCI experience, health self-management, as well as the all-important topic of social participation.
The papers in this issue reflect applications of statistical and survey methodology techniques to a survey of persons with a health condition, techniques that can be used to map change across the SCI population in Switzerland, and support Swiss policy change. Information about the experience of living with a health condition, such as SCI, across key domains of day-to-day life, shaped—positively or negatively—by environmental and psychological factors, helps to plan interventions and to shape health and social policy. It is our hope that the papers in this issue encourage researchers to extend these techniques to other cohort and community surveys for other health conditions, and to persuade health and social policy makers and other stakeholders to see the value and importance of a comprehensive, 360-degree perspective on functioning.
Stucki G, Reinhardt JD, Cieza A, Brach M, Celio M, Joggi D, et al. Developing Swiss Paraplegic Research: building a research institution from the comprehensive perspective. Disabil Rehabil. 2008;30:1063–78.
Chen Y, DeVivo MJ, Richards JS, SanAgustin TB. Spinal cord injury model systems: review of program and national database from 1970 to 2015. Arch Phys Med Rehabil. 2016;97:1797–804. https://doi.org/10.1016/j.apmr.2016.02.027.
Savic G, Frankel HL, Jamous MA, Soni BM, Charlifue S. Participation restriction and assistance needs in people with spinal cord injuries of more than 40 year duration. Spinal Cord Ser Cases. 2018;4:28. https://doi.org/10.1038/s41394-018-0056-9.
A Look at Traumatic Spinal Cord Injury in Canada: Rick Hansen Spinal Cord Registry (RHSCIR). J Spinal Cord Med. 2017;40:870–1. https://doi.org/10.1080/10790268.2017.1387124.
World Health Organization. The International Classification of Functioning, Disability and Health. Geneva: WHO; 2001.
Boes S, Mantwill S, Kaufmann C, Brach M, Bickenbach J, Rubinelli S, et al. Swiss Learning Health System—A national initiative to establish learning cycles for continuous health system improvement. Learn Health Syst. https://doi.org/10.1002/lrh2.1005.
Bickenbach J, Officer A, Shakespeare T, von Groote PM. International Perspectives on Spinal Cord Injury. Geneva: World Health Organization; 2013.
Stucki G, Post MWM. The Swiss Spinal Cord Injury (SwiSCI) Cohort Study. Am J Phy Med Rehab. 2011;90:S1–79.
Bickenbach J, Tennant A, Stucki G. Describing the lived experience of Swiss persons with spinal cord injury. J Rehab Med. 2016;48:113–244.
Publisher’s note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
About this article
Cite this article
Stucki, G., Bickenbach, J. Editorial. Spinal Cord 59, 361–362 (2021). https://doi.org/10.1038/s41393-020-00585-2
Spinal Cord (2022)