Methodology and Epidemiologic Data of the Second International Spinal Cord Injury (InSCI) Community Survey.

OBJECTIVES

Spinal cord injury/disease (SCI/D) contributes significantly to the global burden of disease, with increased mortality and long-term disability. The International Spinal Cord Injury (InSCI) community survey aims to collect epidemiologic data to better understand the lived experience of people with SCI/D by identifying the factors influencing their functioning, health, and well-being.

DESIGN AND

SETTING

Cross-sectional, multinational, observational study conducted every 5 years. Study on the lived experience of people with SCI/D across all WHO regions.

PARTICIPANTS

Individuals with SCI/D from multiple nations (N=15,051).

INTERVENTIONS: Not applicable.

MAIN OUTCOME MEASURES: The present study seeks to describe the participating countries in the second InSCI community survey, focusing on recruitment processes, outcomes, and participant characteristics.

RESULTS

The second InSCI community survey was conducted between May 2022 and October 2024. Thirty-one countries (African region, n=1; Americas region, n=4; Eastern Mediterranean region, n=4; European region, n=13; Southeast Asia region, n=5; Western Pacific region, n=4) participated in the survey, providing datasets from 15,051 persons with SCI/D (response rate: 26.8%) from 209 recruitment centers. Most of the study participants were men (70%), with a weighted median age of 43 years (interquartile range, 32, 58), and slightly more than half lived in urban areas. The majority had traumatic SCI (87%), with traffic collisions (35%), falls from more than 1 m (18%), and work accident (14%) as the most reported reasons. The majority were incompletely injured (55%) and had paraplegia (69%). Participants had been living with SCI/D for a weighted median of 8 years (interquartile range, 4, 17), and 72% needed assistance with their day-to-day activities.

CONCLUSIONS

The rising incidence of SCI worldwide requires tailored health care, rehabilitation, and support systems. Data from the second InSCI community survey will be instrumental to identify gaps in health care provision, inform targeted interventions, and optimize resource allocation.