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A Global Map for Traumatic Spinal Cord Injury Epidemiology: Towards a Living Data Repository for Injury Prevention

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A Global Map for Traumatic Spinal Cord Injury Epidemiology: Towards a Living Data Repository for Injury Prevention Spinal Cord (2011) 49, 493–501 & 2011 International Spinal Cord Society All rights reserved 1362-4393/11 $32.00 www.nature.com/sc ORIGINAL ARTICLE A global map for traumatic spinal cord injury epidemiology: towards a living data repository for injury prevention RA Cripps1, BB Lee2,3, P Wing4, E Weerts5, J Mackay6 and D Brown7 1School of Medicine at Flinders University, (Prevention, Promotion and Primary Health Care Cluster), Sydney, New South Wales, Australia; 2Spinal Medicine Department, Prince of Wales Hospital, Sydney, New South Wales, Australia; 3School of Public Health, University of New South Wales, Sydney, New South Wales, Australia; 4Division of Spine, University of British Columbia, Vancouver, British Columbia, Canada; 5Handicap International, Bach Mai Hospital Spinal Unit, Hanoi, Vietnam; 6School of Public Health of the University of Hong Kong, Pokfulam, Hong Kong and 7Austin Hospital, Melbourne, Victoria, Australia Study design: Literature review. Objectives: To map traumatic spinal cord injury (TSCI) globally and provide a framework for an ongoing repository of data for prevention. Setting: An initiative of the ISCoS Prevention Committee. Methods: The results obtained from the search of Medline/Embase using search phrases: TSCI incidence, aetiology, prevalence and survival were analysed. Stratification of data into green/yellow/red quality ‘zones’ allowed comparison between data. Results: Reported global prevalence of TSCI is insufficient (236–1009 per million). Incidence data was comparable only for regions in North America (39 per million), Western Europe (15 per million) and Australia (16 per million). The major cause of TSCI in these regions involves four-wheeled motor vehicles, in contrast to South-east Asia where two-wheeled (and non-standard) road transport predominates. Southern Asia and Oceania have falls from rooftops and trees as the primary cause. High- fall rates are also seen in developed regions with aged populations (Japan/Western Europe). Violence/ self-harm (mainly firearm-related) was higher in North America (15%) than either Western Europe (6%) or Australia (2%). Sub-Saharan Africa has the highest reported violence-related TSCI in the world (38%). Rates are also high in north Africa/Middle East (24%) and Latin America (22%). Developed countries have significantly improved TSCI survival compared with developing countries, particularly for tetraplegia. Developing countries have the highest 1-year mortality rates and in some countries in sub-Saharan Africa the occurrence of a spinal injury is likely to be a fatal condition within a year. Conclusion: Missing prevalence and insufficient incidence data is a recurrent feature of this review. The piecemeal approach to epidemiological reporting of TSCI, particularly failing to include sound regional denominators has exhausted its utility. Minimum data collection standards are required. Spinal Cord (2011) 49, 493–501; doi:10.1038/sc.2010.146; published online 23 November 2010 Keywords: incidence; prevalence; survival; spinal cord injury; mapping Introduction The last prior international comparisons of the literature was presentedFin text format, in the form of tables of data or performed in 2004 by Ackery et al.1 and in 2006 by in graphical formats. Mackay3 and Rosling (http://www. Wyndaele2 and this review builds on that body of work, gapminder.org/) have shown the value of enhanced mapping updating it to the present day and adding a review of techniques in the portrayal of health data of national and aetiology where available. international significance. We believe that these techniques Our ability to review and analyse large quantities of data can be employed usefully in directing our prevention efforts, is influenced by the format in which those data are ensuring that they are appropriate to each region or country. This report suggests a data repository structure, which allows Correspondence: Dr BB Lee, Spinal Medicine Department, Prince of Wales for simple conversion to a graphical, easily interpretable map Hospital, High Street Entrance Level 2, Randwick, Sydney, New South Wales of global trends in spinal cord injury (SCI), which can be 2031, Australia. easily updated and published as a living document through E-mail: [email protected] Received 29 June 2010; revised 30 August 2010; accepted 6 September 2010; the ISCoS website. As such, it will be open for future published online 23 November 2010 contributions of published and unpublished data. Global map for TSCI RA Cripps et al 494 This project is part of a worldwide SCI mapping project, Box 1 Zones of Informationa which is being undertaken by the Prevention Committee of Green Zone Global region or country with a prospective spinal cord ISCoS and aims to: injury register (PSCIR) or population health registry (including population registries linked or able to be 1. Inform the ISCoS Prevention Committee for coordination linked to health and/or mortality data) of future prevention strategies. Yellow Zone Partial coverage by PSCIR or population health registry 2. Provide data to stakeholders seeking information to Red Zone No PSCIR or population health registry data available. This information is considered to be of insufficient support injury prevention (specifically to inform regional quality to make between global region or country or national SCI prevention programs). comparisons on the basis of incidence. 3. Provide a platform for development of specific tools to aIncidence data is rated on the TSCI global maps using these colours. facilitate injury prevention and encourage uniformity of data collection. 4. Create partnerships within ISCoS to facilitate develop- ment of strategies for primary and secondary prevention Results of SCI. 5. Provide the structure for an ongoing data repository. A total of 377 records were reviewed after a screen of abstracts. Two unpublished additional data sources were It is intended that this work continue as an ongoing received (Vietnam and Saudi Arabia) and conference pro- review, which will be open to contributions of published and ceedings data from two countries were also included unpublished data to assist the ISCoS Prevention Committee (western Norway, Iceland). and other organisations in the task of SCI prevention. Green or yellow zone data was only available for North America (USA and Canada), Australia and Western Europe (Denmark, Greenland, Iceland, Sweden, Ireland and Ger- many). Materials and methods 2 The literature search of Wyndaele was repeated without Discussion date or language restriction using search phrases (exploded): ‘Epidemiology of SCI’, ‘Prevalence of SCI’, ‘Incidence of SCI’ In a 2004 epidemiological review of SCI, Ackery and through Medline and Embase. This search yielded 1872 colleagues noted the need for standardised reporting of articles. These articles and abstracts were screened and added SCI, as did Wyndaele in a 2006 review. Ackery et al. noted to our reference library. Reference lists of global incidence of that countries with similar economies tended to have similar Wyndaele2 and Ackery et al.,1 the prevalence article by injury patterns; Wyndaele also observed the need for Blumer and Quine4 and the articles about non-traumatic SCI improved registration, whereas Ackery suggested that a role from New and Sundararajan5 were also reviewed as well as existed for the involvement of international organisations in conference proceedings. A review of available SCI mortality injury prevention of SCI: we echo these opinions and suggest data was also conducted. minimal standards and a possible mechanism for reporting. World Health Organisation (WHO) regions were used for At a minimum, traumatic and nontraumatic SCI statistics analysis so that countries, which are epidemiologically should be separately reported and the current International 1,2,7 similar to others in the region, could be compared. The Standards data sets should be employed. regions and the countries within were chosen using Most clinicians are aware of the need to report their local mortality estimates from the WHO and the United Nations statistics for incidence and prevalence of SCI, but may lack and other country-specific factors such as income and the tools or financial resources to undertake this task. Failure number of hospitals.6 to refer patients with SCI to a specialised centre makes this The authors decided on the most representative study for task more difficult unless national or regional reporting is each country by reviewing the methodology, population routinely occurring using internationally accepted data covered and the time period of data collection. Preference standards through an injury registry. The absence of national was given to the more recent studies, which provided reporting, illustrated by the many ‘red-zone’ areas in the national statistics and aetiological data. Median data values global maps makes it difficult to determine valid population were calculated for multiple studies of individual countries denominators and even small area variation, helpful in and global regions. determining prevention strategies. Information used in constructing global regions and country maps was divided into three broad categories to Prevalence of SCI globally allow comparison between information of variable quality Insufficient data exist to derive a global prevalence for SCI. (Box 1). Detailed prevalence data are summarised in Table 1. The Maps using SCI incidence and aetiological data were range of reported global prevalence is between 236 and 1009
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