James W Middleton1,2,3,4, Mohit Arora5,6, Annette Kifley5,6, Jillian Clark7, Samantha J Borg8,9, Yvonne Tran10, Sridhar Atresh8, Jasbeer Kaur11, Sachin Shetty12, Andrew Nunn13, Ruth Marshall7,14, Timothy Geraghty8,9. 1. John Walsh Centre for Rehabilitation Research, The Kolling Institute, Northern Sydney Local Health District, St Leonards, NSW, Australia. james.middleton@sydney.edu.au. 2. Sydney Medical School - Northern, Faculty of Medicine and Health, The University of Sydney, Sydney, NSW, Australia. james.middleton@sydney.edu.au. 3. State Spinal Cord Injury Service, Agency for Clinical Innovation, St Leonards, NSW, Australia. james.middleton@sydney.edu.au. 4. Spinal Outreach Service, Royal Rehab, Ryde, NSW, Australia. james.middleton@sydney.edu.au. 5. John Walsh Centre for Rehabilitation Research, The Kolling Institute, Northern Sydney Local Health District, St Leonards, NSW, Australia. 6. Sydney Medical School - Northern, Faculty of Medicine and Health, The University of Sydney, Sydney, NSW, Australia. 7. Faculty of Health and Medical Sciences, University of Adelaide, Adelaide, SA, Australia. 8. Queensland Spinal Cord Injuries Service, Division of Rehabilitation, Princess Alexandra Hospital, Brisbane, QLD, Australia. 9. The Hopkins Centre, School of Health Sciences and Social Work, Griffith University, Brisbane, QLD, Australia. 10. Faculty of Medicine, Health and Human Sciences, Macquarie University, Sydney, NSW, Australia. 11. Royal North Shore Hospital, Northern Sydney Local Health District, St Leonards, NSW, Australia. 12. Prince of Wales Hospital, South Eastern Sydney Local Health District, Randwick, NSW, Australia. 13. Victorian Spinal Cord Service, Austin Health, Heidelberg, VIC, Australia. 14. South Australian Spinal Cord Injury Service, Central Adelaide Local Health Network, Adelaide, SA, Australia.
Abstract
STUDY DESIGN: Cross-sectional survey. OBJECTIVES: To identify common problems across key domains of functioning, health and wellbeing, as well as evaluate self-reported quality of life (QoL) by people with SCI, examining differences by age, gender, injury characteristics and level of mobility. SETTING: Data from four state-wide SCI clinical services, one government insurance agency and three not-for-profit consumer organisations. METHODS: Participants were 18 years or over with SCI and at least 12 months post-injury, recruited between Mar'18 and Jan'19. The Aus-InSCI questionnaire comprised 193 questions, including socio-demographics, SCI characteristics, body functions and structures, activities and participation, environmental and personal factors, and appraisal of health and well-being. General linear model was used to examine differences in functioning and QoL. RESULTS: Participants (mean age 57 years, range 19-94 years) with tetraplegia and/or complete injuries had more health problems, activity/participation problems and environmental barriers. However, self-rated overall QoL did not differ for injury level or completeness. Participants with more recent injuries exhibited lower independence levels, more mental health problems and poorer satisfaction with self and their living conditions. Major activity/participation problems related to intimate relationships and accessing public transportation. Less than half of the working age population were engaged in paid work. The top two environmental barriers frequently related to accessing public places or homes and unfavourable climatic conditions. CONCLUSIONS: This large, comprehensive community survey draws a detailed picture of the lived experience of people with SCI in Australia, identifying priority needs, gaps in services and barriers to achieving a full and satisfying life.
STUDY DESIGN: Cross-sectional survey. OBJECTIVES: To identify common problems across key domains of functioning, health and wellbeing, as well as evaluate self-reported quality of life (QoL) by people with SCI, examining differences by age, gender, injury characteristics and level of mobility. SETTING: Data from four state-wide SCI clinical services, one government insurance agency and three not-for-profit consumer organisations. METHODS: Participants were 18 years or over with SCI and at least 12 months post-injury, recruited between Mar'18 and Jan'19. The Aus-InSCI questionnaire comprised 193 questions, including socio-demographics, SCI characteristics, body functions and structures, activities and participation, environmental and personal factors, and appraisal of health and well-being. General linear model was used to examine differences in functioning and QoL. RESULTS: Participants (mean age 57 years, range 19-94 years) with tetraplegia and/or complete injuries had more health problems, activity/participation problems and environmental barriers. However, self-rated overall QoL did not differ for injury level or completeness. Participants with more recent injuries exhibited lower independence levels, more mental health problems and poorer satisfaction with self and their living conditions. Major activity/participation problems related to intimate relationships and accessing public transportation. Less than half of the working age population were engaged in paid work. The top two environmental barriers frequently related to accessing public places or homes and unfavourable climatic conditions. CONCLUSIONS: This large, comprehensive community survey draws a detailed picture of the lived experience of people with SCI in Australia, identifying priority needs, gaps in services and barriers to achieving a full and satisfying life.