From Injury to Inclusion
Diana Pacheco Barzallo, Mirja Gross-Hemmi, Vanessa Noonan, Julia Engkasan, Reuben Escorpizo, James Middleton, Jerome Bickenbach, Gerold StuckiObjective:
To map the scope, thematic focus, and contribution of publications based on the International Spinal Cord Injury Community Survey (InSCI), and to identify remaining knowledge gaps in the literature.
Design:
We conducted a structured evidence map of peer-reviewed publications derived from InSCI. InSCI is a cross-sectional survey of adults with spinal cord injury/disease (SCI/D). Wave 1 (2017 to 2019) included 12,591 participants across 22 countries; wave 2 (2022 to 2024) included 15,249 participants across 32 countries. Publications were tracked and classified into 7 IPSCI-based domains.
Results:
By April 2026, InSCI generated 117 peer-reviewed publications (including 11 from wave 2). Health care needs were the largest category, followed by epidemiological studies, enabling environments, and education/employment. InSCI-based publications reported cross-country differences in quality of life, health care access, unmet needs, environmental barriers, and employment. Publications also reported a high burden of secondary health conditions, variation in health service use, and lower employment rates among persons with SCI/D compared with the general population.
Conclusions:
InSCI offers an expanding international data set on the lived experiences of individuals with SCI/D. Although publication activity is high across several IPSCI domains, critical research gaps remain regarding equity, gender, education, younger populations, and general population comparisons.