The Aus-InSCI Translation Project: Translating the Aus-InSCI community survey findings to improve clinical practice and outcomes for Queenslanders and Australians with Spinal Cord Injury

About the Project

Project aim and benefits

Funded by NIISQ Agency, the aim of the Aus-InSCI Translation Project is to undertake a specific program of planned translational activities based on the results of the 2018-19 and 2024 Aus-InSCI Community Survey. The overarching translational approach will be to use the survey findings to promote and facilitate positive changes to clinical practice, define areas requiring enhanced community support for people with SCI and investigate and inform changes in relevant policies and systems, to enhance the lived experience and outcomes of people with SCI in Queensland and Australia including NIISQ participants.

The Project represents a unique research and translation opportunity due to:1) the large, total number of survey participants with 481 and 1579 people with SCI respectively in Queensland and Australia participating in the 2018-19 community survey and similar numbers expected in 2024;
2) the ability to undertake longitudinal research due to the inclusion of the second community survey sample. Participants who competed the 2018-19 survey will be asked to also complete it in 2024;
3) the ability to examine survey results (for the 2024 survey) specifically for NIISQ participants; and
4) the ability to use the survey findings to design targeted research translation and dissemination activities, including positive clinical practice change, to improve outcomes for NIISQ participants and all people with SCI across Queensland and Australia. 

The ultimate goal of the Aus-InSCI Community Survey research is to inform improvements in health, functioning, social and economic outcomes as well as improving knowledge and capability in consumers and healthcare professionals. The Aus-InSCI Translation Project will play a vital role in achieving this goal by promoting and facilitating positive changes to clinical practice, defining areas requiring enhanced community support for people with SCI and investigating and informing changes in relevant policies and systems, to enhance the lived experience and outcomes of people with spinal cord injury (SCI) in Queensland and Australia.

Project significance

The 2018-19 Aus-InSCI Community Survey represents the largest survey of community-dwelling people with SCI ever conducted in Australia. Prior to this, large population-based Australian studies examining the lived experience and most important problems and needs of people with SCI were lacking. Based on the ICF model, 2018-19 Aus-InSCI Community Survey covers a very broad range of issues and measures related to selfreported health, functioning, social inclusion, economic participation, support needs and quality of life for people with SCI living in Australia; and provides a baseline for future comparison within Australia, as well as the opportunity for international benchmarking.

The 2024 Aus-InSCI Survey Questionnaire includes a comprehensive and unique range of questions covering socio-demographics (including information on level of support, funding source, housing, education, income) as well as injury details. Other topics include: health problems, mental health (including anxiety and depression, self-efficacy and loneliness), pain, activity and participation levels, life problems, function and level of independence, work, environmental factors including physical accessibility and societal attitudes, health service use, satisfaction, experiences and unmet needs, personal factors, general health and quality of life, social integration, physical activity, use of telehealth, fatigue, pressure injuries, and sleep problems.

Progress to date 

Expected outcome

Knowledge and capability outcomes

The project aims to raise awareness among consumers and healthcare professionals about key issues and priorities in the lives of people with SCI. This will be achieved through the publication and wide dissemination
of the plain language summary documents, infographics and other translational outputs. This will empower people with SCI to make informed decisions about their health and well-being, leading to better outcomes and increased satisfaction with the health system.

Health, functioning and social outcomes

Through enhancing the self-management capability of people with SCI, the knowledge, skills and practice of clinicians and better service delivery and planning informed by the Aus-InSCI Study findings, improved health and psychosocial outcomes can be achieved for people living with SCI. For example, focusing on areas such as better pain management, enhancing bladder and bowel function, and improving self-efficacy will contribute to overall well-being and quality of life. The project also aims to increase participation outcomes for people with SCI, including employment, social activities, and hobbies. The Aus-InSCI results and translational outputs including policy briefs and associated advocacy will support the need for comprehensive, early intervention facilitating greater inclusion and engagement in various aspects of life. Identifying and addressing modifiable environmental barriers, such as poor access, financial difficulties, lack of transportation, and insufficient services or assistive technologies, will improve environmental and resource accessibility for people with SCI. This will promote greater social integration and participation, enabling individuals to lead more fulfilling lives.

Economics

The Aus-InSCI results will inform value-based healthcare decision-making, ensuring equitable, sustainable, and transparent allocation of resources for people living with SCI. This will lead to better outcomes and experiences while optimising resource utilisation within the healthcare system.

Operation and policy change

The project will contribute to enhanced future research planning and prioritisation for people living with SCI. The Aus-InSCI results will inform health, socio-economic, policy reform, and research funding stream equity, driving positive changes in policies, funding allocation, and research focus, to address the needs and
priorities of people with SCI. The project will identify target areas for policy and advocacy interventions, health and service delivery systems and funding to assist individuals realise their potential, to participate in and contribute to society, and to have a greater say in their own future.

The NIISQ Agency provided funding to The Hopkins Centre to support the Aus-InSCI Translation Project to conduct research/ activities that aim to improve the health and quality of life outcomes for NIISQ participants.