The International Spinal Cord Injury (InSCI) Community Survey Project and Australian arm (Aus-InSCI)

About the Project

The International Spinal Cord Injury (InSCI) Community Survey is the first ever worldwide survey for people with spinal cord injury (SCI) living in the community. It forms part of a Learning Health System for SCI and is linked with wider initiatives, in particular the World Health Organization (WHO) Rehabilitation 2030, a Call for Action. Australia is one country among many others taking part in this project to capture the lived experience of people with spinal cord injury (SCI) by asking those who know best: people with lived experience of SCI. The project is a survey for people with spinal cord injury (SCI) living in the community who have been discharged from a rehabilitation facility for at least 12 months.

In 2018, the first Community Survey took place and was completed by 1579 Australians across Victoria, New South Wales, South Australia and Queensland. The Australian arm of InSCI is known as Aus-InSCI Community Survey. The InSCI 2018 Community Survey was just the beginning of our work to better understand the needs and circumstances of people with SCI. We are currently in the process of conducting a five-year follow-up Survey, as one of more than 40 countries participating in the second InSCI Community Survey. This is a national project that is being led by Professor James Middleton (Lead) and Dr Mohit Arora (Co-Lead) of the John Walsh Centre for Rehabilitation Research, The Kolling Institute, Faculty of Medicine and Health, University of Sydney.

Click to here to read about the Aus-InSCI Translation Project that is translating these survey findings into practical and co-designed solutions.

What is the InSCI Community Survey about?

With more than 20,000 Australian people, and their families, impacted by spinal cord injury (SCI), we need to know more about how we can better understand and support this community.

In 2018, Australia joined the International Spinal Cord Injury Community Survey with 21 other countries from different regions of the world. During the research, Australian participants completed a Survey questionnaire of 193 questions – some questions for everyone around the globe, and some just for our local Australians. We aimed to learn more about the function, health and wellbeing of people with spinal cord injury, their problems and needs, so we can identify ways we can help them live to their full potential. The Community Survey included questions about:

Health and wellbeing
Work and employment
Level of functioning and environmental factors
Quality of life and social factors
Australian participants were also asked about pain, physical and social activity, and sleep and fatigue.

Click here to download the What Is InSCI Infographic.

Click here to download Project Flyer

Who took part in the 2018 Community Survey?

People aged 18 and over, with traumatic or non-traumatic SCI residing in the community and more than 12-months past their injury were asked to participate.

1579 people responded, representing:

73% males, 27% females
Injury: Incomplete tetraplegia 30%, Incomplete paraplegia 37%, Complete tetraplegia 24%, Complete paraplegia 9%
Average age: 57
Years since injury: 17