Results of the International Spinal Cord Injury Survey in Australia (Aus-InSCI)
Lead investigator: Prof James Middleton, University of Sydney, NSW
Co-investigators: Andrew Nunn, Doug Brown, Timothy Geraghty, Susan Urquhart, Ruth Marshall, Jillian Clark, Ian Cameron, and Bamini Gopinath
Background and aims
The Australian arm of the International Spinal Cord Injury (Aus-InSCI) Community Survey is part of a global cross-sectional study to describe the ’lived experience’ of people with spinal cord injury (SCI) and identify key factors influencing level of functioning and independence, health, community participation and quality of life.
The Aus-InSCI study uniquely combined data from SCI units in four Australian states, a NSW government insurance agency and three consumer organisations, using privacy-preserving data management, secure transfer and data-linkage processes, to create a representative, population-based, anonymized dataset of people with SCI. The Aus-InSCI questionnaire consists of 125 (international) and additional 55 (national) questions, including socio-demographics, SCI characteristics, body functions and structures, activities and participation, environmental and personal factors, and appraisal of health and well-being.
1583 adults (18 years or older) with traumatic or non-traumatic SCI at least 12 months post-injury were recruited from March to December 2018. The majority of participants were male (73%) and over age of 50 years (71%), with paraplegia (61%) and incomplete lesions (68%). The cohort possessed a range of ‘lived experience’ with SCI from less than 5 years (23%) to greater than 30 years (21%). The most common health issues included fatigue (74%), sexual (71%), pain (69%), sleep (57%), spasm/contracture (56%) and bowel (50%).
Aus-InSCI represents the largest and most comprehensive survey of health-related issues, functioning, social inclusion, economic participation and support needs ever conducted in Australia. The results provide a baseline for future comparison within Australia and international benchmarking.
The Spinal Research Institute was a co-funder of this project.