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.

 

Thank you to the people who completed the previous 2018-19 survey and keep an eye out for the 2024 survey !

The Aus-InSCI Community Survey research team would like to sincerely thank those people who completed and returned the 2018 Survey. We are asking all of those people to please consider responding to the next 2024 Survey as it will provide very valuable information by allowing us to compare how your and other people’s experience of living with a SCI has changed over the past 5 years.

For those people who will receive the Community Survey for the first time in 2024, we hope that you will we also take the opportunity to complete it so that we can get more information about your lived experience. This will help us to improve outcomes and services for people with SCI and allow people to have a say in their own future.

 

Important information for people with SCI in Queensland who receive the 2024 Aus-InSCI Community Survey:

The first round of surveys in the 2024 Aus-InSCI community survey research have recently been mailed to people with a SCI in Queensland who completed the previous survey in 2018-19. Thank you to those people who have already completed the new survey. If you have recently received the 2024 survey, please try to complete it using the online login details before the 18th October 2024 so that your responses can be included in the international research project. If you are not able to complete it by the 18th October, we'd still like you to complete it when you are able to so your responses can be included in the Australian part of the research project. 

 

Surveys will also be emailed to Spinal Life Australia members with SCI in the coming weeks.

 

 

 Click here to download Project Flyer

 

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.

turquoise tile Click here to download the What Is InSCI Infographic.

 

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

 

What were the findings from the first Community Survey?

General findings

Daily life

Most people rated their quality of life as good or very good, but still experience regular challenges. 

  • 29% said accessing public transport is a problem
  • 26% said using hands and fingers is a problem

2018 Australian Results Infographic 2018 Australian Results Infographic 2

turquoise tile For more information click here to download the 2018 Australian Results Infographic.

 

Bladder problems

Problems with the bladder were very common among people with spinal cord injuries.

  • 60% had problems
  • 12% had extreme problems
  • 34% had an indwelling catheter
  • 48% had urinary tract infections

Turquoise tile For more information click here to download the Bladder, bowel and sexual function after SCI Infographic.

 Bowel, bladder & sexual function info-graphic 1 Bowel, bladder & sexual function infographic

 

Experiencing pain

Pain is an ever-present part of the lives of many people with spinal cord injury.

  • 46% experience continuous pain
  • 41% saw a physio in last 12-months
  • 44% had nerve and joint/muscle pain
  • 70% use three or more strategies to manage pain

 For more information click here to download the Pain after SCI Infographic. 

Infographic Infographic

 

Employment

Most people with a spinal cord injury wanted to work, but for some, managing their health and finding suitable work was an overwhelming challenge.

  • 50% worked at some point since injury
  • It took an average of 2.3 years to get back to work
  • 35% used work rehabilitation services
  • Participants worked on average 30 hours per week

For more information click here to download the Working after SCI Infographic.

Infographic Infographic

 

Other Information / Translation Outputs

Translation is the process of using the research findings to make positive changes to the way problems that people with SCI are having are addressed by health professionals or to make changes to policies affecting people with SCI at a system level e.g. government or other organisations.

 

Our Publications

There were many areas of interest from the 2018 Community Survey. The project team has been working on distributing this information in the form of publications. There are publications that are still in progress, however, the following papers have now been published.

 

Our reports

National Report: Australian arm of the International Spinal Cord Injury Community Survey (Aus-InSCI Community Survey)

Cover page of the National Report

 

Queensland results of the 2018 InSCI Community Survey

This report presents key findings from the Community Survey for the 481 Queenslanders who completed the survey, including an overview of employment and health and secondary conditions.

Front cover of the "Australian arm of the International Spinal Cord Injury (Aus-InSCI) Community Survey – Queensland results" Report

 

Aus_InSCI 2018 Community Survey - Translation Report

This report is about a research project designed to translate the results from the Australian arm of the International Spinal Cord Injury (Aus-InSCI) Community Survey into positive change for people with SCI in Australia. Dr Delena Amsters presented on the Aus-InSCI Translation Project at a recent Hopkins Hour: Meaningful Research through Stakeholder Engagement on 17 May, 2023 (starts at minute 12:44). Click here to access a PDF version of the presentation delivered during this Hopkins Hour.

Report front cover

 

Our Presentations

  • Middleton J, Geraghty T, Kifley A, Jones T, Marshall R. Invited Workshop - Tackling hidden disability in people with spinal cord injury (SCI): it’s everyone’s business. Geraghty T: “Hidden disability in people with spinal cord injury - cauda equina syndrome with preserved ability to walk as an example” Australia and New Zealand Spinal Cord Society, Annual Scientific Meeting, Adelaide, 22/11/23.
  • Middleton J, Geraghty T, Kifley A, Wynn R. Concurrent Workshop - Tackling hidden disability: It’s everyone’s business. 6th Annual Scientific Meeting, Rehabilitation Medicine Society of Australia and New Zealand. Hobart, Tasmania, 11/09/23.
  • James W Middleton, Mohit Arora, Tim Geraghty, Ruth Marshall, Andrew Nunn & the Aus-InSCI group. Results of the International Spinal Cord Injury Survey in Australia (Aus-InSCI). International Spinal Cord Society Annual Scientific Meeting, Nice, France, 5-7 November 2019.
  • Arora M, Geraghty T, Marshall R, Nunn A, Middleton JW for the Aus-InSCI group. Shoulder pain, it’s prevalence, patterns and impact on people with spinal cord injury in Australia: Sub-study of the Aus-InSCI community survey. International Spinal Cord Society Annual Scientific Meeting, Nice, France, 5-7 November 2019.
  • Samantha Borg, Michele Foster, Timothy Geraghty. International Spinal Cord Injury Survey: Health characteristics and overview of community dwelling spinal cord injury patients in Queensland. Bold Ideas Better Solutions – The Hopkins Centre Symposium, Brisbane, 18th October 2019
  • James W Middleton, Mohit Arora, Tim Geraghty, Ruth Marshall, Andrew Nunn & the Aus-InSCI group. Implementation and Results of the International Spinal Cord Injury (InSCI) Survey in Australia. Australia and New Zealand Spinal Cord Society Annual Scientific Meeting, Melbourne, 21-23 August 2019.

 

Who was involved in our project?

Our core research team

 

Our translation core research team

 

Our new team members (joined 2022)

  • Professor Glen Davis (NSW) 
  • Prof David Berlowitz (VIC) 
  • Dr Marnie Graco (VIC) 

 

Our project partners

  • iCare NSW
  • Spinal Cord Injuries Australia, NSW
  • Forward Ability Support (formerly known as ParaQuad), NSW
  • Paraplegic and Quadriplegic Association of South Australia (PQSA)
  • PHRN-CDL, Curtin University, WA
  • Northern Sydney Local Health District, NSW
  • South Eastern Sydney Local health District, NSW
  • Royal Rehab, NSW
  • Austin Health, VIC
  • Lifetime Support, SA
  • Central Adelaide Local Health Network, SA
  • Princess Alexandra Hospital, QLD
  • Spinal Life Australia, QLD and WA
  • AQA, VIC
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Researchers

Rachel Jones

Samantha Borg

Tim Geraghty

Professor and Director

Delena Amsters