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International Perspectives on
Spinal Cord Injury
INTERNATIONAL PERSPECTIVES ON SPINAL CORD INJURY
ISBN 978 92 4 156466 3Spinal cord injury need not be a death sentence. But this requires e? ective
emergency response and proper rehabilitation services, which are currently not available to the majority of people in the world. Once we have ensured survival, then the next step is to promote the human rights of people with spinal cord injury, alongside other persons with disabilities. All this is as much about awareness as it is about resources. I welcome this important report, because it will contribute toimproved understanding and therefore better practice."SHUAIB CHALKEN, UN SPECIAL RAPPORTEUR ON DISABILITY
Spina bi? da is no obstacle to a full and useful life. I"ve been a Paralympic champion, a wife, a mother, a broadcaster and a member of the upper house of the British Parliament. It"s taken grit and dedication, but I"m certainly not superhuman. All of this was only made possible because I could rely on good healthcare, inclusive education, appropriate wheelchairs, an accessible environment, and proper welfare bene? ts. I hope that policy-makers everywhere will read this report, understandhow to tackle the challenge of spinal cord injury, and take the necessary actions."TANNI GREY?THOMPSON, PARALYMPIC MEDALLIST AND MEMBER OF UK HOUSE OF LORDS
Disability is not incapability, it is part of the marvelous diversity we are surrounded by. We need to understand that persons with disability do not want charity, but opportunities. Charity involves the presence of an inferior and a superior who, generously", gives what he does not need, while solidarity is given between equals, in a horizontal way among human beings who are di? erent, but equal in their rights. We need to eliminate the barriers, construct a way to liberty: the liberty ofbeing di? erent. This is true inclusion." LENÍN MORENO, FORMER VICE?PRESIDENT OF THE REPUBLIC OF ECUADOR
International Perspectives
on Spinal Cord InjuryWHO Library Cataloguing-in-Publication Data
International perspectives on spinal cord injury / edited by Jerome Bickenbach ... [et al]1.Spinal cord injuries - history. 2.Spinal cord injuries - epidemiology. 3.Spinal cord injuries - prevention and control. 4.Spinal
cord injuries - rehabilitation. 5.Delivery of health care. 6.Disabled persons - psychology. I.Bickenbach, Jerome. II.Ocer, Alana.
III.Shakespeare, Tom. IV.von Groote, Per. V.World Health Organization. VI.The International Spinal Cord Society.
ISBN 978 92 4 156466 3
(NLM classication: WL 403)
ISBN 978 92 4 069185 8 (Daisy)
ISBN 978 92 4 069186 5 (ePub)
© World Health Organization 2013
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iiiContents
Preface vii
Acknowledgements
i xContributors
xi 1 . Understanding spinal cord injury 1 Ai m and scope of this report 4 Wh at is spinal cord injury? 4 Th e medical dimension 4 Th e historical dimension of spinal cord injury 6 Sp inal cord injury as a challenge to health systems and to society 7 To ols for understanding the spinal cord injury experience 7 Ov erview 9 2 . A global picture of spinal cord injury 11 W hat do we know about spinal cord injury? 13 P revalence of spinal cord injury 15 I ncidence of spinal cord injury 17 T raumatic spinal cord injury 17 N on-traumatic spinal cord injury 22M ortality and life expectancy 22
C osts of spinal cord injury 26
D ata and evidence for spinal cord injury 28
D ata sources 28
I nformation standards 30
D ata issues and concerns 31
D e?nitions and standardization of data 31
U nderreporting 3 1
Other issues
31C onclusion and recommendations 32
3 . Prevention of spinal cord injury 43
C auses of traumatic spinal cord injury 45
R oad trac crashes 46
Fa lls 4 9
Violence
4 9Causes of non-traumatic spinal cord injury
51A ctivities, places and circumstances associated with spinal cord injuries 52
iv
Occupational injuries 52
S port and recreation-related injuries 55N atural disasters 58
C onclusion and recommendations 59
4 . Health care and rehabilitation needs 65
U nderstanding the health impact of spinal cord injury 68
P otential complications 69
H ealth care needs 72
P re-hospital and acute care 72
P ost-acute medical care and rehabilitation 73
A ssistive technology 78
H ealth maintenance 81
C onclusion and recommendations 83
5 . Health systems strengthening 93
U nmet needs 95
H ealth care 95
R ehabilitation 9 6
Health systems strengthening
97L eadership and governance 97
S ervice delivery 98
Hum an resources 10 3