Australian arm of the International Spinal Cord Injury (Aus-InSCI) community survey: 1. population-based design, methodology and cohort profile

James W. Middleton; Mohit Arora; Annette Kifley; Timothy Geraghty; Samantha J. Borg; Ruth Marshall; Jillian Clark; Andrew Nunn; Anna Ferrante; Christine Fekete; Gerold Stucki; Bamini Gopinath; Ashley Craig; Ian D. Cameron

doi:10.1038/s41393-022-00850-6

Australian arm of the International Spinal Cord Injury (Aus-InSCI) community survey: 1. population-based design, methodology and cohort profile

James W. Middleton^*, Mohit Arora, Annette Kifley, Timothy Geraghty, Samantha J. Borg, Ruth Marshall, Jillian Clark, Andrew Nunn, Anna Ferrante, Christine Fekete, Gerold Stucki, Bamini Gopinath, Ashley Craig, Ian D. Cameron

^*Corresponding author for this work

Macquarie University Hearing (MU Hearing)

Research output: Contribution to journal › Article › peer-review

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Abstract

STUDY DESIGN: Cross-sectional survey.

OBJECTIVES: To describe design and methods of Australian arm of International Spinal Cord Injury (Aus-InSCI) community survey, reporting on participation rates, potential non-response bias and cohort characteristics.

SETTING: Survey of community-dwelling people with SCI at least 12 months post-injury, recruited between March 2018 and January 2019, from state-wide SCI services, a government insurance agency and not-for-profit consumer organisations across four Australian states.

METHODS: The Aus-InSCI survey combined data for people with SCI from nine custodians, using secure data-linkage processes, to create a population-based, anonymised dataset. The Aus-InSCI questionnaire comprised 193 questions. Eligibility, response status and participation rates were calculated. Descriptive statistics depict participant characteristics. Logistic regression models were developed for probability of participation, and inverse probability weights generated to assess potential non-response bias.

RESULTS: 1579 adults with SCI were recruited, a cooperation rate of 29.4%. Participants were predominantly male (73%), with 50% married. Mean age was 57 years (range 19-94) and average time post-injury 17 years (range 1-73). Paraplegia (61%) and incomplete lesions (68%) were most common. Males were more likely than females to have traumatic injuries (p < 0.0001) and complete lesions (p = 0.0002), and younger age-groups were more likely to have traumatic injuries and tetraplegia (p < 0.0001). Potential non-response bias evaluated using selected outcomes was found to be negligible in the Aus-InSCI cohort.

CONCLUSIONS: The Aus-InSCI survey made efforts to maximise coverage, avoid recruitment bias and address non-response bias. The distributed, linked and coded (re-identifiable at each custodian level) 'virtual quasi-registry' data model supports systematic cross-sectional and longitudinal research.

Original language	English
Pages (from-to)	194–203
Number of pages	10
Journal	Spinal Cord
Volume	61
Issue number	3
Early online date	24 Sept 2022
DOIs	https://doi.org/10.1038/s41393-022-00850-6
Publication status	Published - Mar 2023

Bibliographical note

Copyright Crown 2022. Version archived for private and non-commercial use with the permission of the author/s and according to publisher conditions. For further rights please contact the publisher.

Keywords

health policy
quality of life
rehabilitation

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10.1038/s41393-022-00850-6Licence: CC BY

Publisher version (open access)Final published version, 875 KBLicence: CC BY

Cite this

Middleton, J. W., Arora, M., Kifley, A., Geraghty, T., Borg, S. J., Marshall, R., Clark, J., Nunn, A., Ferrante, A., Fekete, C., Stucki, G., Gopinath, B., Craig, A., & Cameron, I. D. (2023). Australian arm of the International Spinal Cord Injury (Aus-InSCI) community survey: 1. population-based design, methodology and cohort profile. Spinal Cord, 61(3), 194–203. https://doi.org/10.1038/s41393-022-00850-6

@article{719a694f50394afebd9f7ba293b2146c,

title = "Australian arm of the International Spinal Cord Injury (Aus-InSCI) community survey: 1. population-based design, methodology and cohort profile",

abstract = "STUDY DESIGN: Cross-sectional survey.OBJECTIVES: To describe design and methods of Australian arm of International Spinal Cord Injury (Aus-InSCI) community survey, reporting on participation rates, potential non-response bias and cohort characteristics.SETTING: Survey of community-dwelling people with SCI at least 12 months post-injury, recruited between March 2018 and January 2019, from state-wide SCI services, a government insurance agency and not-for-profit consumer organisations across four Australian states.METHODS: The Aus-InSCI survey combined data for people with SCI from nine custodians, using secure data-linkage processes, to create a population-based, anonymised dataset. The Aus-InSCI questionnaire comprised 193 questions. Eligibility, response status and participation rates were calculated. Descriptive statistics depict participant characteristics. Logistic regression models were developed for probability of participation, and inverse probability weights generated to assess potential non-response bias.RESULTS: 1579 adults with SCI were recruited, a cooperation rate of 29.4%. Participants were predominantly male (73%), with 50% married. Mean age was 57 years (range 19-94) and average time post-injury 17 years (range 1-73). Paraplegia (61%) and incomplete lesions (68%) were most common. Males were more likely than females to have traumatic injuries (p < 0.0001) and complete lesions (p = 0.0002), and younger age-groups were more likely to have traumatic injuries and tetraplegia (p < 0.0001). Potential non-response bias evaluated using selected outcomes was found to be negligible in the Aus-InSCI cohort.CONCLUSIONS: The Aus-InSCI survey made efforts to maximise coverage, avoid recruitment bias and address non-response bias. The distributed, linked and coded (re-identifiable at each custodian level) 'virtual quasi-registry' data model supports systematic cross-sectional and longitudinal research.",

keywords = "health policy, quality of life, rehabilitation",

author = "Middleton, {James W.} and Mohit Arora and Annette Kifley and Timothy Geraghty and Borg, {Samantha J.} and Ruth Marshall and Jillian Clark and Andrew Nunn and Anna Ferrante and Christine Fekete and Gerold Stucki and Bamini Gopinath and Ashley Craig and Cameron, {Ian D.}",

note = "Copyright Crown 2022. Version archived for private and non-commercial use with the permission of the author/s and according to publisher conditions. For further rights please contact the publisher.",

year = "2023",

month = mar,

doi = "10.1038/s41393-022-00850-6",

language = "English",

volume = "61",

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Middleton, JW, Arora, M, Kifley, A, Geraghty, T, Borg, SJ, Marshall, R, Clark, J, Nunn, A, Ferrante, A, Fekete, C, Stucki, G, Gopinath, B, Craig, A & Cameron, ID 2023, 'Australian arm of the International Spinal Cord Injury (Aus-InSCI) community survey: 1. population-based design, methodology and cohort profile', Spinal Cord, vol. 61, no. 3, pp. 194–203. https://doi.org/10.1038/s41393-022-00850-6

TY - JOUR

T1 - Australian arm of the International Spinal Cord Injury (Aus-InSCI) community survey: 1. population-based design, methodology and cohort profile

AU - Middleton, James W.

AU - Arora, Mohit

AU - Kifley, Annette

AU - Geraghty, Timothy

AU - Borg, Samantha J.

AU - Marshall, Ruth

AU - Clark, Jillian

AU - Nunn, Andrew

AU - Ferrante, Anna

AU - Fekete, Christine

AU - Stucki, Gerold

AU - Gopinath, Bamini

AU - Craig, Ashley

AU - Cameron, Ian D.

N1 - Copyright Crown 2022. Version archived for private and non-commercial use with the permission of the author/s and according to publisher conditions. For further rights please contact the publisher.

PY - 2023/3

Y1 - 2023/3

N2 - STUDY DESIGN: Cross-sectional survey.OBJECTIVES: To describe design and methods of Australian arm of International Spinal Cord Injury (Aus-InSCI) community survey, reporting on participation rates, potential non-response bias and cohort characteristics.SETTING: Survey of community-dwelling people with SCI at least 12 months post-injury, recruited between March 2018 and January 2019, from state-wide SCI services, a government insurance agency and not-for-profit consumer organisations across four Australian states.METHODS: The Aus-InSCI survey combined data for people with SCI from nine custodians, using secure data-linkage processes, to create a population-based, anonymised dataset. The Aus-InSCI questionnaire comprised 193 questions. Eligibility, response status and participation rates were calculated. Descriptive statistics depict participant characteristics. Logistic regression models were developed for probability of participation, and inverse probability weights generated to assess potential non-response bias.RESULTS: 1579 adults with SCI were recruited, a cooperation rate of 29.4%. Participants were predominantly male (73%), with 50% married. Mean age was 57 years (range 19-94) and average time post-injury 17 years (range 1-73). Paraplegia (61%) and incomplete lesions (68%) were most common. Males were more likely than females to have traumatic injuries (p < 0.0001) and complete lesions (p = 0.0002), and younger age-groups were more likely to have traumatic injuries and tetraplegia (p < 0.0001). Potential non-response bias evaluated using selected outcomes was found to be negligible in the Aus-InSCI cohort.CONCLUSIONS: The Aus-InSCI survey made efforts to maximise coverage, avoid recruitment bias and address non-response bias. The distributed, linked and coded (re-identifiable at each custodian level) 'virtual quasi-registry' data model supports systematic cross-sectional and longitudinal research.

AB - STUDY DESIGN: Cross-sectional survey.OBJECTIVES: To describe design and methods of Australian arm of International Spinal Cord Injury (Aus-InSCI) community survey, reporting on participation rates, potential non-response bias and cohort characteristics.SETTING: Survey of community-dwelling people with SCI at least 12 months post-injury, recruited between March 2018 and January 2019, from state-wide SCI services, a government insurance agency and not-for-profit consumer organisations across four Australian states.METHODS: The Aus-InSCI survey combined data for people with SCI from nine custodians, using secure data-linkage processes, to create a population-based, anonymised dataset. The Aus-InSCI questionnaire comprised 193 questions. Eligibility, response status and participation rates were calculated. Descriptive statistics depict participant characteristics. Logistic regression models were developed for probability of participation, and inverse probability weights generated to assess potential non-response bias.RESULTS: 1579 adults with SCI were recruited, a cooperation rate of 29.4%. Participants were predominantly male (73%), with 50% married. Mean age was 57 years (range 19-94) and average time post-injury 17 years (range 1-73). Paraplegia (61%) and incomplete lesions (68%) were most common. Males were more likely than females to have traumatic injuries (p < 0.0001) and complete lesions (p = 0.0002), and younger age-groups were more likely to have traumatic injuries and tetraplegia (p < 0.0001). Potential non-response bias evaluated using selected outcomes was found to be negligible in the Aus-InSCI cohort.CONCLUSIONS: The Aus-InSCI survey made efforts to maximise coverage, avoid recruitment bias and address non-response bias. The distributed, linked and coded (re-identifiable at each custodian level) 'virtual quasi-registry' data model supports systematic cross-sectional and longitudinal research.

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KW - quality of life

KW - rehabilitation

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DO - 10.1038/s41393-022-00850-6

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ER -

Australian arm of the International Spinal Cord Injury (Aus-InSCI) community survey: 1. population-based design, methodology and cohort profile

Abstract

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