Reha Kongresse 2018


Cohort profile of the International Spinal Cord Injury (InSCI) Community Survey

C. Fekete1, M. Brach1, C. Ehrmann1, M. Post2, G. Stucki1 (1Nottwil ; 2Groningen NL)

The International Spinal Cord Injury (InSCI) community survey presents the first effort to systematically collect information on the lived experience of persons with spinal cord injury (SCI) across the globe. This paper reports on the methodological features of recruitment and data collection procedures; recruitment results; and basic characteristics of participants by country and income setting.

Design: Cross-sectional survey.

Setting: 22 countries representing all six WHO regions, community setting.

Participants: n=12,591 persons with traumatic or non-traumatic SCI aged ≥18 years.

Main Outcomes: Recruitment and data collection procedures; recruitment results; basic participants' characteristics.


Eight countries used predefined sampling frames and 14 countries applied convenience sampling for recruitment. Most countries recruited participants through specialized rehabilitation facilities, patient organizations, and/or acute and general hospitals. Modes of approaching potential participants depended on the sampling strategy and multiple response modes were offered to maximize participation. Contact rates ranged from 33%-98%; cooperation rates from 29%-90%, and response rates from 23%-54%. The majority of participants were males (73%), median age was 52 (IQR 40-63), 60% had a partner, 8% reported that they were born in another country than currently residing, and median education was 12 years (IQR 9-15). Paraplegia was the main diagnosis (63%), traumatic etiologies the major cause of injury (81%), and median time since injury (TSI) was 9 years (IQR 4-19). Participants from higher income quartiles were overrepresented and older, more often diagnosed with tetraplegia, with longer TSI, higher education, and more often foreign country of birth than participants from lower quartiles.

Discussion et conclusions

The successful implementation of the InSCI survey enables to compare the lived experience of persons with SCI across the globe.

Importance pour la pratique
Results of the InSCI survey constitute a crucial starting point for an international learning experience in SCI.