The International Spinal Cord Injury (InSCI) community survey was developed to gain information about functioning, health, and well-being of persons living with SCI within and across diverse nations. The survey was executed in 2017-2018 in 22 countries. Data on a total of 12,591 persons with traumatic or non-traumatic SCI were collected.

The majority of participants were males (73%), median age was 52 (IQR 40-63), 60% had a partner, 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).

In this instructional course, we will present the background and design of InSCI, the first main results and how InSCI relates to implementation of a Learning Health System for Spinal Cord Injury (LHS-SCI), which is a joint effort of ISCoS and ISPRM.

Chair: Marcel Post

1: Design and Coordination of the InSCI Survey: Christine Fekete, Switzerland (15 minutes)
Swiss Paraplegic Research initiated and coordinated the study in collaboration with the 22 national study centers. In this presentation, we will discuss (1) the design, coordination, logistics and quality control procedures developed for this project, and (2) the characteristics of the study sample, including differences between higher and lower income countries.

2: Work Participation: Professor Marcel Post, Netherlands (15 minutes)
Observed and expected employment rates, and differences between InSCI participants and population averages per country were analyzed. The worldwide observed employment rate was 38%, with a wide variation across countries from 10.3% up to 61.4%. Some countries showed substantially higher or lower employment rates than expected based on the composition of their sample. Gaps between the observed employment rates among participants with SCI and the respective general populations ranged from 14.8% to 54.8%.

3: Impact of Environmental Barriers: Professor Jan Reinhardt, China / Switzerland (15 minutes)
The prevalence of experienced environmental barriers across countries was compared with analysis of determinants of environmental barriers at the individual and country level. Most barriers were experienced with regard to accessibility, climate, transportation, finances, and state services. More severe barriers were experienced in lower income settings, in particular for medical supplies and finances.

4: Health Indicators and Quality of Life: Professor James Middleton, Australia (15 minutes)
How performance indicators of the health system are linked to self-reported satisfaction with life domains was analyzed. The most important health system indicators were social attitudes and access to health care services, followed by nursing care, access to public spaces, the provision of vocational rehabilitation, transportation, medication and assistive devices. With some exceptions, persons with SCI living in higher income countries generally reported higher QoL than people in lower income countries

5: The way forward: Professor James Middleton (15 minutes)
How to use results of the InSCI survey as evidence for implementation of recommendations for improving the societal response to the needs of persons with SCI at the national level in collaboration with ISCoS and ISPRM as international societies.

6: General discussion (15 minutes)