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International Perspectives on Spinal Cord Injury S   U   M   M   A   R   Y   

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8172019 Who Nmh Vip 1303 Eng 2

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International Perspectives onSpinal Cord Injury

S U M M A R Y

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copy World Health Organization 2013

All rights reserved Publications of the World Health Organization are available on the WHO web site (wwwwhoint) or can be purchasedfrom WHO Press World Health Organization 20 Avenue Appia 1211 Geneva 27 Switzerland (tel +41 22 791 3264 fax +41 22 791 4857e-mail bookorderswhoint) Requests for permission to reproduce or translate WHO publications ndashwhether for sale or for non-commercialdistribution ndash should be addressed to WHO Press through the WHO web site (wwwwhointaboutlicensingcopyright_formenindexhtml)

The designations employed and the presentation of the material in this publication do not imply the expression of any opinion whatsoever on

the part of the World Health Organization concerning the legal status of any country territory city or area or of its authorities or concerning thedelimitation of its frontiers or boundaries Dot ted lines on maps represent approximate border lines for which there may not yet be full agreement

The mention of specific companies or of certain manufacturersrsquo products does not imply that they are endorsed or recommended by the WorldHealth Organization in preference to others of a similar nature that are not mentioned Errors and omissions excepted the names of propr ietaryproducts are distinguished by initial capital letters

All reasonable precautions have been taken by the World Health Organization to verify the information contained in this publication Howeverthe published material is being distributed without warranty of any kind either expressed or implied The responsibility for the interpretationand use of the material lies with the reader In no event shall the World Health Organization be liable for damages arising from its use

The named authors alone are responsible for the views expressed in this publication

Printed in Malta

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i

Preface

Te international symbol o disability is the wheelchair and the stereotype o a person withdisability is a young man with paraplegia While these images are very amiliar at the sametime we know that this is not an accurate picture o the diversity o global disability Whereas15 o the population are affected by disability less than 01 o the population have spinalcord injury

However spinal cord injury is particularly devastating or two reasons First it ofenstrikes out o the blue A driver is tired and inebriated late at night and veers off the roadresulting in a roll-over crash and consequent tetraplegia Te teenager dives into a pool onlyto break her neck A workman alls rom scaffolding and becomes paraplegic An earth-quake strikes and a personrsquos back is injured by alling masonry A middle aged woman isparalysed due to pressure rom a tumour In all these examples someone in the prime otheir lie becomes disabled in an instant None o us are immune rom this risk

Second the consequences o SCI are commonly either premature mortality or at bestsocial exclusion rauma care systems are requently inadequate For many access to high

quality rehabilitation and assistive devices is unavailable Ongoing health care is lackingwhich means that a person with spinal cord injury is likely to die within a ew years romurinary tract inections or pressure sores Even when individuals are lucky enough to receivethe health and rehabilitation care they require they are likely to be denied access to the edu-cation and employment which could enable them to regain their independence and make acontribution to their amilies and their society

None o these devastating outcomes is necessary Te message o this report is thatspinal cord injury is preventable that spinal cord injury is survivable and that spinal cordinjury need not prevent good quality o lie and ull contribution to society Te report con-tains the best available scientific evidence about strategies to reduce the incidence o spinalcord injury particularly rom traumatic causes Te report also discusses how the health

system can respond effectively to people who are injured Finally the report discusses howpersonal adjustment and relationships can be supported how barriers in the environmentcan be removed and how individuals with spinal cord injury can gain access to schoolsuniversities and workplaces

We can turn spinal cord injury rom a threat into an opportunity Tis has two dimen-sions First spinal cord injury challenges almost every aspect o the health system So ena-bling health systems to react effectively to the challenge o spinal cord injury will mean thatthey can respond better to many other types o i llness and injury Second a world which ishospitable to people with spinal cord injury in particular will inevitably be more inclusive

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ii

International Perspectives on Spinal Cord Injury

o disability in general Improved accessibility and greater availability o assistivedevices wil l help millions o the worldrsquos disabled and older people And finally ocourse the word ldquoopportunityrdquo signals the better lives and the productive con-tribution to which people with spinal cord injury rightly aspire and which wecan help them to attain i only we have the political will and the organizationalcommitment As earlier with the World report on disability so now with Interna-tional Perspectives on Spinal Cord Injury this report has potential to change livesand open doors I urge the worldrsquos policy-makers to pay attention to its findings

Dr Margaret ChanDirector-General

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iii

Spinal cord injury (SCI) is a medically complex and lie-disrupting conditionSCI reers to damage to the spinal cord arising rom trauma ndash such as carcrash ndash or rom non-traumatic disease or degeneration ndash such as tuberculosis(B) SCI encompasses the baby born with spina biida and the constructionworker who alls rom scaolding It includes the victim o conlict or gun

violence and the older person who develops SCI as a result o osteoporosisor a tumour

SCI has costly consequences both or individuals and society People arelet dependent are excluded rom school and are less likely to be employedWorst o all they risk premature death SCI is both a public health and humanrights chal lenge With the right policy responses it is possible to live thriveand contribute with SCI anywhere in the world People with SCI are peoplewith disabilities and they are entitled to the same human rights and respectas all other people with disabilities Once a person with SCI has had their

immediate health needs met social and environmental barriers are the mainobstacles to successul unctioning and inclusion in society It is essential toensure that health services education transport and employment are avail-able and accessible to people with SCI alongside other people with disabi litiesSCI wil l always be l ie-changing but it need not be a tragedy and it need notbe a burden

he aims o International Perspectives on Spinal Cord Injury are to assemble and summarize inormation on SCI in particular the epidemiol-

ogy services interventions and policies that are relevant together with thelived experience o people with SCI across the lie course and throughoutthe world

make recommendations or actions based on this evidence that are consist-ent with the aspirations or inclusion and participation as expressed in theConvention on the Rights of Persons with Disabilities

Summary

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iv

International Perspectives on Spinal Cord Injury

Key findings

1 Spinal cord injury is a significant public health issue

Te global incidence of SCI both traumatic and non-traumatic is likely tobe between 40 and 80 cases per million population Based on the 2012 worldpopulation estimates this means that every year between 250 000 and 500 000people suffer a spinal cord injury (1) Te incidence o traumatic SCI (SCI)reported in country-level studies ranges rom 13 per million to 53 per millionHistorically up to 90 o SCI has been traumatic in origin but data rom themost recent studies indicate a slight trend towards an increase in the share onon-traumatic SCI (NSCI) Available studies report an incidence o NSCIo 26 per million

No global estimates of SCI prevalence are available Data on SCI incidenceand prevalence are inadequate and inconsistent Even in developed countriesfigures vary due to differences in case ascertainment and modelling method-ology as well as to real differences in epidemiology SCI prevalence figuresrange rom 280 per million population in Finland (2) to 681 per million inAustralia (3) to 1298 per million in Canada (4) NSCI prevalence or adultsand children in Australia is 367 per million (5) and in Canada 1227 per mil-lion (4) Overall combined SCI and NSCI prevalence or Canada in 2010was 2525 per million population

Increasing prevalence of SCI in some countries Tere is a trend towardsincreasing prevalence o SCI in high-income countries due to increases in sur-

vival rates which have reached approximately 70 o general population lie

expectancy or tetraplegics and 88 or people with complete paraplegia (6 )However survival rates in low- and middle-income countries remain poor ndashas low as one to two years afer injury in some settings minus and this contributesto lower prevalence (7 ) Global ageing is likely to increase rates o NSCI andthere is a slight trend or NSCI to increase as a proportion o total SCI

Changing profile of victims Te SCI incidence rate peaks in young adulthoodand to a lesser extent in old age While young males dominate the statisticsthe profile is changing to include more older people and more women Over-all age at time o injury is increasing

Road traffic crashes falls and violence are the main three causes of SCI Road traffic injuries predominate in the Arican Region accounting or nearly

70 o cases and are a prominent underlying cause o SCI in other WHOregions as well ranging between 40 in the South-East Asia Region and 55in the Western Pacific Region Falls the second leading cause account or

just over 40 o all cases in the South-East Asia and Eastern MediterraneanRegions Te Arican Region reports the lowest percentage (14) o alls withthe other WHO regions showing percentages between 27 and 36 Rates oassault including violence and sel-harm mostly rom firearms as a causeo SCI vary considerably across regions the Americas Arican and EasternMediterranean Regions reporting the highest percentages o 14 12 and

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v

Summary

11 respectively Work-related accidents contribute to at least 15 o all SCIcases Across all regions sport and leisure activities contribute less than 10o all cases o SCI Attempted suicide has been shown to contribute to over10 o SCI cases in some countries uberculosis may account or up to 20o all NSCI cases in some contexts

People with SCI die earlier Studies have indicated that people with SCI are2 to 5 times more likely to die prematurely than people without SCI Peoplewith tetraplegia are at higher risk than people with paraplegia and peoplewith complete lesions are at higher risk than people with incomplete lesionsMortality is particularly high in the first year afer injury (8) and mortalityrates are strongly affected by the capacity o the health-care system especiallyemergency care Studies on in-hospital average mortality rates in low-incomecountries are at least three times as high as those in the high-resource settings

In low-income countries preventable secondary conditions remain themain causes of death for people with SCI (9) In high-income countries themain causes o death or people with SCI have changed over recent decades(10 11) with urological complications in decline and the leading cause odeath shifing to respiratory problems pneumonia or influenza in particularHeart disease suicide and neurological problems are other associated causeso death

2 Personal and social impacts of spinal cord injury areconsiderable

SCI has a debilitating psychological impact 20ndash30 o people with SCI show

clinically significant symptoms o depression which is substantially higherthan the general population (12) although the majority o people eventuallyadapt well to SCI

People with SCI have a narrower margin of health due partly to preventablecomplications such as urinary tract inections and pressure sores

SCI is associated with family breakdown but also family resilience Imme-diately afer injury SCI can have a negative impact on personal relationshipsand is associated with a higher rate o divorce However post-SCI relation-ships generally do better Carers o children and young people with spinabifida or traumatic SCI typically experience isolation and stress

Lower participation in school Children and young people with spina bifida

or acquired SCI are less likely to attend school and less likely to participate intertiary education Tey ace obstacles in the transition between school andtertiary education and between education and employment

SCI is associated with lower rates of economic participation Average globalemployment rates or people with SCI are only 37 with a high o 51 inEurope (13)

Costs of SCI are higher than for comparable conditions such as dementiamultiple sclerosis cerebral palsy and bipolar disorder In Australia the lie-time costs (including the financial costs and burden-o-disease costs) were

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vi

International Perspectives on Spinal Cord Injury

estimated to be AUS$5 million or a person with paraplegia and AUS$95 mil-lion or a person with tetraplegia (14) Indirect costs such as lost earningsgenerally exceed direct costs

3 Barriers to services and environments restrict participationand undermine quality of life

Inadequate policy and provision Ofen appropriate policies and servicesare lacking in areas such as inclusive education accessible environments andrehabilitation For example in low- and middle- income countries only 5minus15o people have the assistive devices that they need (15) In a Netherlands studymore than hal o respondents with SCI were delayed leaving in-patient reha-bilitation due to delays in obtaining wheelchairs (16 )

Lack of funding One Nigerian study or instance showed that or more than40 o respondents with SCI acute treatment costs represented over 50 otheir annual income (17 ) Similarly cost is one o the main barriers when itcomes to assistive devices

Physical access barriers Homes schools workplaces and even hospitals areofen inaccessible to people who use wheelchairs Inaccessibility o transportis a major obstacle to participating in society particularly or those who livein rural areas Tis prevents people with SCI leaving hospital or nursing homeand becoming independent

Negative attitudes It may be alsely perceived or example that tetraplegia isa ate worse than death or that people in wheelchairs cannot work or cannothave intimate relations Even amily members may have negative attitudes and

low expectations Ofen prejudice arises rom lack o knowledge and lack ocontact Lack of knowledge Rehabilitation providers may lack knowledge and skills

relevant to SCI For example lack o expertise among service providers canhinder people with SCI receiving appropriate assistive technologies Primarycare staff may not know about preventable complications in SCI and diag-nostic overshadowing can mean that people with SCI do not receive screeningor treatment or their general health needs More evidence is needed on whatworks both in prevention and management o SCI

4 Spinal cord injury is preventable

Death and disability associated with road traffic crashes can be reduced through the sae systems approach which highlights what can be done toimprove road environments vehicle saety and driver behaviour (18) Forexample the worldrsquos first compulsory seat-belt laws were introduced in Aus-tralia in 1970 and in conjunction with government efforts to improve roaddesign and regulations on car saety there was a 4 pa drop in the annualincidence o SCI rom road traffic crashes (19)

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vii

Summary

Workplace codes on health and safety can reduce injuries caused in miningconstruction and agriculture

Limiting access to guns and knives prevents injuries and reduces cost to soci-ety Measures or limiting access include bans licensing schemes a mini-mum age or buyers background checks and sae storage requirements Tesemeasures have been successully implemented in Austria Brazil and somestates in the USA

Injuries from sporting and leisure activities can be minimized through betterdesign (eg o swimming pools play equipment and ski runs) saety inorma-tion (eg dangers o diving into shallow water training o rugby coaches) andsports-wide awareness

Early detection and treatment can reduce the prevalence of spinal B (20)as well as spinal tumours arising rom cancer

Improved nutrition reduces the incidence of spina bifida and other neuraltube defects (21) Voluntary periconceptional oral olate supplementation(three months beore and afer conception) has been shown to reduce the rateo inants being born with neural tube deects including spina bifida (22 23)Many countries that have a policy o supplementation o wheat flour with olicacid have also seen a all in the incidence o spina bifida (24ndash27 )

5 Spinal cord injury is survivable

Appropriate pre-hospital care is vital for immediate survival Quick rec-ognition early evaluation and appropriate management o suspected SCIare required Pre-hospital management in traumatic SCI requires a rapid

evaluation including measurement o vital signs and level o consciousnessinitiation o injury management including stabilization o vital unctionsimmobilization o the spine to preserve neurological unction until long-termspinal stability can be established and control o bleeding body tempera-ture and pain and prompt and sae access to the health-care system Peopleshould ideally arrive in an acute care setting within two hours which relieson adequate emergency and rescue services

Acute care ensures stabilization Acute care may involve surgical interventionor conservative management but accurate diagnosis o SCI and co-occurringconditions is the vital first step Many actors should be taken into consid-eration to determine the most appropriate management approach including

level o injury type o racture degree o instability presence o neural com-pression impact o other injuries surgical timing availability o resourcessuch as expertise and appropriate medical and surgical acilities and benefitsand risks In all cases people with SCI and their amily members should begiven an inormed choice between conservative and surgical management

Ongoing health care maintenance is required for survival and good qualityof life Te individual can avoid or survive the complications o SCI such asurinary tract inections and pressure ulcers remain healthy and enjoy a longand ull lie with access to ongoing health care People with SCI ofen have

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viii

International Perspectives on Spinal Cord Injury

a narrower margin o health or example a raised risk o chest inectionsand cardiovascular disease Without access to basic health care together withproducts such as catheters and appropriate cushions ollowed up by advice onhealthy living a person with SCI is more likely to die prematurely

6 Spinal cord injury need not prevent good health and socialinclusion

A person with SCI who has access to health care personal assistance i requiredand assistive devices should be able to return to study live independently makean economic contribution and participate in amily and community lie Once stabilized there is a need for access to relevant acute and post-acute

medical care and rehabilitation services to ensure that unctioning is maxi-mized and that the individual can become as independent as possible Tereare different models o service delivery but specialist centres have been shownto reduce costs result in ewer complications and result in ewer rehospi-talizations compared to nonspecialized services People with SCI give highpriority to achieving control o bladder and bowel unctions Terapy canenhance unction in lower and upper limbs and teach techniques or achiev-ing independence in everyday activities Mental health services and advice areimportant depression is associated with ewer improvements in unctioningand increased rate o health complications Inormation and support withsexual and reproductive health needs should also be part o rehabilitation

Appropriate assistive devices are a vital component of rehabilitation Forexample more than 90 o people with SCI require some orm o wheelchair

Tese must be appropriate or the individual and or the setting Other assis-tive technology needs include modifications in and around the home envi-ronmental control and sometimes communication systems or people withtetraplegia

Services should support return to education and employment Sel-helpgroups accessible buildings and transport vocational rehabilitation and anti-discrimination measures can ensure that children and adults can return tostudy live independently make an economic contribution and participate inamily and community lie

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ix

Summary

Recommendations

1 Improve health sector response to spinal cord injury

Tis requires building capacity o the health and rehabilitation workorce strength-ening prevention and early response services ensuring that appropriate medicalservices and rehabilitation services are available and accessible improving coordi-nation to enhance effectiveness and save costs extending health insurance cover-age so that SCI does not lead to catastrophic health expenditure and identiyingstrategies or the supply o appropriate assistive technology and health products

2 Empower people with spinal cord injury and their families

People with SCI need inormation so that they can take responsibility or theirown health care afer discharge Inormation should be shared with amily mem-bers during rehabilitation Support or amily members and other caregivers canprevent stress and burnout

In high-income countries an independent living model o personal assistancecan be empowering and cost-effective or people with SCI who have high sup-port needs Community-based rehabilitation (CBR) is important in low-incomesettings In all settings social networks sel-help groups and disabled peoplersquosorganizations can promote empowerment and participation Access to physicalactivities and sport can promote both physiological and psychological well-being

3 Challenge negative attitudes to people with spinal cord injury

As part o general disability awareness campaigns this can involve a range ointerventions including undergraduate education or doctors and other healthproessionals classroom activities to reduce stigma and awareness campaignsthrough media

4 Ensure that buildings transport and information areaccessible

Tis requires enorceable national access standards teaching architects anddesigners about universal design improving access to social housing promoting

ldquouniversally designedrdquo bus rapid transport mandating accessibility or privatetaxis and using organizations o persons with disabilities to consult on acces-sibility and monitor progress

5 Support employment and self-employment

Vocational training flexible working supported employment and community-based rehabilitation projects with a ocus on livelihood are all promising optionsor people with SCI returning to work Social protection schemes should be

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x

International Perspectives on Spinal Cord Injury

available depending on the setting and the economic status o the individual butshould not act as a disincentive to return to work

6 Promote appropriate research and data collection

Tere is a pressing need to both increase and improve routine data collectionand research on SCI Disaggregated statistics on SCI using standardized ICECIterminology can assist incident trend analysis and help in monitoring o policyresponses SCI registries which compile data directly rom hospitals togetherwith longitudinal population-based cohort studies covering major lie areas arethe best ways o collecting SCI data At service level data are required on costsoutcomes and costbenefits

7 Implement recommendations

Implementing these recommendations requires the involvement o different sec-tors ndash health education social protection labour transport and housing ndash anddifferent actors ndash governments civil society organizations (including organiza-tions o persons with disabilities) proessionals the private sector and peoplewith SCI and their amilies Sectors and actors need to work together because mul-tidisciplinary teamwork will maximize success It is essential that countries tailortheir actions to their specific contexts Where countries are limited by resourceconstraints some o the priority actions particularly those requiring technicalassistance and capacity-building can be included within the ramework o inter-national cooperation

Conclusion

While the incidence o traumatic and non-traumatic SCI can and should bereduced there will always be new cases o SCI SCI will continue to affect mainlyindividuals in the prime o lie Ensuring an adequate medical and rehabilitationresponse ollowed by supportive services and accessible environments wil l helpminimize the disruption to people with SCI and their amilies Tese measureswill also reduce the overall costs to society in terms o dependency and lost pro-ductivity and to the individual in terms o lower sel-esteem and impaired quality

o lie SCI is preventable survivable and need not preclude good health and socialinclusion But action by governments and other stakeholders is urgently requiredWithout effective action SCI will remain all too ofen a catastrophe

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Summary

References1 United Nations Department of Economic and Social Affairs Population Division World population

prospec ts the 2012 revision DVD Edition 2013

2 Dahlberg A et al Prevalence of spinal cord injury in Helsinki Spinal Cord 2005 4347-50 doi

httpdxdoiorg101038sjsc3101616 PMID15520842

3 OrsquoConnor PJ Prevalence of spinal cord injury in Australia Spinal Cord 2005 4342-46 doi http

dxdoiorg101038sjsc3101666 PMID15326472

4 Noonan VK et al Incidence and prevalence of spinal cord injury in Canada a national per-

spective Neuroepidemiology 2012 38219-226 doi httpdxdoiorg101159000336014

PMID22555590

5 New PW Farry A Baxter D Noonan VK Prevalence of non-traumatic spinal cord injury in Victoria

Australia Spinal Cord 2013 5199-102 doi httpdxdoiorg101038sc201261 PMID22665222

6 Middleton JW et al Life expectancy after spinal cord injury a 50-year study Spinal Cord 2012

50803-811 doi httpdxdoiorg101038sc201255 PMID22584284

7 Gosselin RA Coppotelli C A follow-up study of patients with spinal cord injury in Sierra Leone

International Orthopaedics 2005 29330-332 doi httpdxdoiorg101007s00264-005-

0665-3 PMID16094542

8 Lidal IB et al Mortality after spinal cord injury in Norway Journal of Rehab ilitat ion Medicine 2007

39145-151 doi httpdxdoiorg10234016501977-0017 PMID17351697

9 Rathore MFA Spinal cord injuries in the developing world In JH Stone M Blouin eds

International Encyclopedia of Rehabilitation 2013 Available online httpcirriebuffaloedu

encyclopediaenarticle141

10 Hagen EM Rekand T Gilhus NE Groslashnning M Traumatic spinal cord injuriesndashincidence mecha-

nisms and course Tidsskrift for Den Norske Laegeforening 2012 132831-837 doi httpdxdoi

org104045tidsskr100859 PMID22511097

11 Leal-Filho MB et al Spinal cord injury epidemiological study of 386 cases with emphasis on

those patients admitted more than four hours after the trauma Arquivos de Neuro-Ps iquiatria

2008 66 2B365-368 doi httpdxdoiorg101590S0004-282X2008000300016 PMID18641873

12 Post MWM van Leeuwen CMC Psychosocial issues in spinal cord injury a review Spinal Cord

2012 50382-389 doi httpdxdoiorg101038sc2011182 PMID22270190

13 Young AE Murphy GC Employment status after spinal cord injury (1992ndash2005) a review with impli-

cations for interpretation evaluation further research and clinical practice International Journal of

Rehabilitation 2009 321-11 doi httpdxdoiorg101097MRR0b013e32831c8b19 PMID19057392

14 Access Economics for the Victorian Neurotrauma Initiative The economic cost of spinal cord

injury and traumatic brain injury in Australia 2009 (httpwwwtacvicgovauabout-the-tac

our-organisationresearchtac-neurotrauma-researchvnithe20economic20cost20of20spinal-

20cord20injury20and20traumatic20brain20injury20in20australiapdf accessed 9 January 2013)

15 WHO Guidelines on the provision of manual wheelchairs in less-resourced settings Geneva World

Health Organization 2008

16 Post MWM van Asbeck FW van Dijk AJ Schrijvers AJ Services for spinal cord injured availability and

satisfaction Spinal Cord 1997 35109-115 doi httpdxdoiorg101038sjsc3100362 PMID9044519

17 Kawu AA et al A cost analysis of conservative management of spinal cord-injured patients in

Nigeria Spinal Cord 2011 491134-1137 doi httpdxdoiorg101038sc201169 PMID2169127818 Peden M et al eds World report on road traffic injury prevention Geneva World Health

Organization 2004

19 OrsquoConnor P Trends in spinal cord injury Accident Analysis and Prevention 2006 3871ndash77 doi

httpdxdoiorg101016jaap200503025 PMID16111641

20 Harries AD et al The HIV-associated tuberculosis epidemicndashwhen will we act Lancet 2010

3751906-1919 doi httpdxdoiorg101016S0140-6736(10)60409-6 PMID20488516

21 Yi Y Lindemann M Colligs A Snowball C Economic burden of neural tube defects and impact of

prevention with folic acid a literature review European Journal of Pediatrics 2011 1701391-1400

doi httpdxdoiorg101007s00431-011-1492-8 PMID21594574

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International Perspectives on Spinal Cord Injury

22 Toriello HV Policy and Practice Guideline Committee of the American College of Medical

Genetics Policy statement on folic acid and neural tube defects Genetics in Medicine 2011

13593-596 doi httpdxdoiorg101097GIM0b013e31821d4188 PMID21552133

23 De-Regil LM Fernaacutendez-Gaxiola AC Dowswell T Pentildea-Rosas JP Effects and safety of pericon-

ceptional folate supplementation for preventing birth defects Cochrane Database of Systematic

Reviews 2010 6CD007950 PMID2092776724 Flour Fortification Initiative FFI Database Atlanta 2012 (httpwwwsphemoryeduwheatflour

globalmapphp accessed 28 May 2012)

25 Williams LJ et al Decline in the prevalence of spina bifida and anencephaly by raceethnicity 1995ndash

2002 Pediatrics 2005 116580-586 doi httpdxdoiorg101542peds2005-0592 PMID16140696

26 Berry RJ Bailey L Mulinare J Bower C Folic Acid Working Group Fortification of flour with folic

acid Food and Nutrition Bulletin 2010 31 SupplS22-S35 PMID20629350

27 Alasfoor D Elsayed MK Mohammed AJ Spina bifida and birth outcome before and after

fortification of flour with iron and folic acid in Oman Eastern Mediterranean Health Journal 2010

16533-538 PMID20799554

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WHONMHVIP1303

ldquoSpinal cord injury need not be a death sentence But this requires effective

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 to

improved understanding and therefore better practicerdquo

SHUAIB CHALKEN UN SPECIAL RAPPORTEUR ON DISABILITY

ldquoSpina bifida is no obstacle to a full and useful life Irsquove been a Paralympic championa wife a mother a broadcaster and a member of the upper house of the British

Parliament Itrsquos taken grit and dedication but Irsquom 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

benefits I hope that policy-makers everywhere will read this report understand

how to tackle the challenge of spinal cord injury and take the necessary actionsrdquo

TANNI GREY983085THOMPSON PARALYMPIC MEDALLIST AND ME MBER OF UK HOUSE O F LORDS

ldquoDisability 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

lsquogenerouslyrsquo gives what he does not need while solidarity is given between equals

in a horizontal way among human beings who are different but equal in their

rights We need to eliminate the barriers construct a way to liberty the liberty of

being different This is true inclusionrdquo

LENIacuteN MORENO FORMER VICE983085PRESIDENT OF THE REPUBLIC OF ECUADOR

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copy World Health Organization 2013

All rights reserved Publications of the World Health Organization are available on the WHO web site (wwwwhoint) or can be purchasedfrom WHO Press World Health Organization 20 Avenue Appia 1211 Geneva 27 Switzerland (tel +41 22 791 3264 fax +41 22 791 4857e-mail bookorderswhoint) Requests for permission to reproduce or translate WHO publications ndashwhether for sale or for non-commercialdistribution ndash should be addressed to WHO Press through the WHO web site (wwwwhointaboutlicensingcopyright_formenindexhtml)

The designations employed and the presentation of the material in this publication do not imply the expression of any opinion whatsoever on

the part of the World Health Organization concerning the legal status of any country territory city or area or of its authorities or concerning thedelimitation of its frontiers or boundaries Dot ted lines on maps represent approximate border lines for which there may not yet be full agreement

The mention of specific companies or of certain manufacturersrsquo products does not imply that they are endorsed or recommended by the WorldHealth Organization in preference to others of a similar nature that are not mentioned Errors and omissions excepted the names of propr ietaryproducts are distinguished by initial capital letters

All reasonable precautions have been taken by the World Health Organization to verify the information contained in this publication Howeverthe published material is being distributed without warranty of any kind either expressed or implied The responsibility for the interpretationand use of the material lies with the reader In no event shall the World Health Organization be liable for damages arising from its use

The named authors alone are responsible for the views expressed in this publication

Printed in Malta

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i

Preface

Te international symbol o disability is the wheelchair and the stereotype o a person withdisability is a young man with paraplegia While these images are very amiliar at the sametime we know that this is not an accurate picture o the diversity o global disability Whereas15 o the population are affected by disability less than 01 o the population have spinalcord injury

However spinal cord injury is particularly devastating or two reasons First it ofenstrikes out o the blue A driver is tired and inebriated late at night and veers off the roadresulting in a roll-over crash and consequent tetraplegia Te teenager dives into a pool onlyto break her neck A workman alls rom scaffolding and becomes paraplegic An earth-quake strikes and a personrsquos back is injured by alling masonry A middle aged woman isparalysed due to pressure rom a tumour In all these examples someone in the prime otheir lie becomes disabled in an instant None o us are immune rom this risk

Second the consequences o SCI are commonly either premature mortality or at bestsocial exclusion rauma care systems are requently inadequate For many access to high

quality rehabilitation and assistive devices is unavailable Ongoing health care is lackingwhich means that a person with spinal cord injury is likely to die within a ew years romurinary tract inections or pressure sores Even when individuals are lucky enough to receivethe health and rehabilitation care they require they are likely to be denied access to the edu-cation and employment which could enable them to regain their independence and make acontribution to their amilies and their society

None o these devastating outcomes is necessary Te message o this report is thatspinal cord injury is preventable that spinal cord injury is survivable and that spinal cordinjury need not prevent good quality o lie and ull contribution to society Te report con-tains the best available scientific evidence about strategies to reduce the incidence o spinalcord injury particularly rom traumatic causes Te report also discusses how the health

system can respond effectively to people who are injured Finally the report discusses howpersonal adjustment and relationships can be supported how barriers in the environmentcan be removed and how individuals with spinal cord injury can gain access to schoolsuniversities and workplaces

We can turn spinal cord injury rom a threat into an opportunity Tis has two dimen-sions First spinal cord injury challenges almost every aspect o the health system So ena-bling health systems to react effectively to the challenge o spinal cord injury will mean thatthey can respond better to many other types o i llness and injury Second a world which ishospitable to people with spinal cord injury in particular will inevitably be more inclusive

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ii

International Perspectives on Spinal Cord Injury

o disability in general Improved accessibility and greater availability o assistivedevices wil l help millions o the worldrsquos disabled and older people And finally ocourse the word ldquoopportunityrdquo signals the better lives and the productive con-tribution to which people with spinal cord injury rightly aspire and which wecan help them to attain i only we have the political will and the organizationalcommitment As earlier with the World report on disability so now with Interna-tional Perspectives on Spinal Cord Injury this report has potential to change livesand open doors I urge the worldrsquos policy-makers to pay attention to its findings

Dr Margaret ChanDirector-General

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iii

Spinal cord injury (SCI) is a medically complex and lie-disrupting conditionSCI reers to damage to the spinal cord arising rom trauma ndash such as carcrash ndash or rom non-traumatic disease or degeneration ndash such as tuberculosis(B) SCI encompasses the baby born with spina biida and the constructionworker who alls rom scaolding It includes the victim o conlict or gun

violence and the older person who develops SCI as a result o osteoporosisor a tumour

SCI has costly consequences both or individuals and society People arelet dependent are excluded rom school and are less likely to be employedWorst o all they risk premature death SCI is both a public health and humanrights chal lenge With the right policy responses it is possible to live thriveand contribute with SCI anywhere in the world People with SCI are peoplewith disabilities and they are entitled to the same human rights and respectas all other people with disabilities Once a person with SCI has had their

immediate health needs met social and environmental barriers are the mainobstacles to successul unctioning and inclusion in society It is essential toensure that health services education transport and employment are avail-able and accessible to people with SCI alongside other people with disabi litiesSCI wil l always be l ie-changing but it need not be a tragedy and it need notbe a burden

he aims o International Perspectives on Spinal Cord Injury are to assemble and summarize inormation on SCI in particular the epidemiol-

ogy services interventions and policies that are relevant together with thelived experience o people with SCI across the lie course and throughoutthe world

make recommendations or actions based on this evidence that are consist-ent with the aspirations or inclusion and participation as expressed in theConvention on the Rights of Persons with Disabilities

Summary

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iv

International Perspectives on Spinal Cord Injury

Key findings

1 Spinal cord injury is a significant public health issue

Te global incidence of SCI both traumatic and non-traumatic is likely tobe between 40 and 80 cases per million population Based on the 2012 worldpopulation estimates this means that every year between 250 000 and 500 000people suffer a spinal cord injury (1) Te incidence o traumatic SCI (SCI)reported in country-level studies ranges rom 13 per million to 53 per millionHistorically up to 90 o SCI has been traumatic in origin but data rom themost recent studies indicate a slight trend towards an increase in the share onon-traumatic SCI (NSCI) Available studies report an incidence o NSCIo 26 per million

No global estimates of SCI prevalence are available Data on SCI incidenceand prevalence are inadequate and inconsistent Even in developed countriesfigures vary due to differences in case ascertainment and modelling method-ology as well as to real differences in epidemiology SCI prevalence figuresrange rom 280 per million population in Finland (2) to 681 per million inAustralia (3) to 1298 per million in Canada (4) NSCI prevalence or adultsand children in Australia is 367 per million (5) and in Canada 1227 per mil-lion (4) Overall combined SCI and NSCI prevalence or Canada in 2010was 2525 per million population

Increasing prevalence of SCI in some countries Tere is a trend towardsincreasing prevalence o SCI in high-income countries due to increases in sur-

vival rates which have reached approximately 70 o general population lie

expectancy or tetraplegics and 88 or people with complete paraplegia (6 )However survival rates in low- and middle-income countries remain poor ndashas low as one to two years afer injury in some settings minus and this contributesto lower prevalence (7 ) Global ageing is likely to increase rates o NSCI andthere is a slight trend or NSCI to increase as a proportion o total SCI

Changing profile of victims Te SCI incidence rate peaks in young adulthoodand to a lesser extent in old age While young males dominate the statisticsthe profile is changing to include more older people and more women Over-all age at time o injury is increasing

Road traffic crashes falls and violence are the main three causes of SCI Road traffic injuries predominate in the Arican Region accounting or nearly

70 o cases and are a prominent underlying cause o SCI in other WHOregions as well ranging between 40 in the South-East Asia Region and 55in the Western Pacific Region Falls the second leading cause account or

just over 40 o all cases in the South-East Asia and Eastern MediterraneanRegions Te Arican Region reports the lowest percentage (14) o alls withthe other WHO regions showing percentages between 27 and 36 Rates oassault including violence and sel-harm mostly rom firearms as a causeo SCI vary considerably across regions the Americas Arican and EasternMediterranean Regions reporting the highest percentages o 14 12 and

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v

Summary

11 respectively Work-related accidents contribute to at least 15 o all SCIcases Across all regions sport and leisure activities contribute less than 10o all cases o SCI Attempted suicide has been shown to contribute to over10 o SCI cases in some countries uberculosis may account or up to 20o all NSCI cases in some contexts

People with SCI die earlier Studies have indicated that people with SCI are2 to 5 times more likely to die prematurely than people without SCI Peoplewith tetraplegia are at higher risk than people with paraplegia and peoplewith complete lesions are at higher risk than people with incomplete lesionsMortality is particularly high in the first year afer injury (8) and mortalityrates are strongly affected by the capacity o the health-care system especiallyemergency care Studies on in-hospital average mortality rates in low-incomecountries are at least three times as high as those in the high-resource settings

In low-income countries preventable secondary conditions remain themain causes of death for people with SCI (9) In high-income countries themain causes o death or people with SCI have changed over recent decades(10 11) with urological complications in decline and the leading cause odeath shifing to respiratory problems pneumonia or influenza in particularHeart disease suicide and neurological problems are other associated causeso death

2 Personal and social impacts of spinal cord injury areconsiderable

SCI has a debilitating psychological impact 20ndash30 o people with SCI show

clinically significant symptoms o depression which is substantially higherthan the general population (12) although the majority o people eventuallyadapt well to SCI

People with SCI have a narrower margin of health due partly to preventablecomplications such as urinary tract inections and pressure sores

SCI is associated with family breakdown but also family resilience Imme-diately afer injury SCI can have a negative impact on personal relationshipsand is associated with a higher rate o divorce However post-SCI relation-ships generally do better Carers o children and young people with spinabifida or traumatic SCI typically experience isolation and stress

Lower participation in school Children and young people with spina bifida

or acquired SCI are less likely to attend school and less likely to participate intertiary education Tey ace obstacles in the transition between school andtertiary education and between education and employment

SCI is associated with lower rates of economic participation Average globalemployment rates or people with SCI are only 37 with a high o 51 inEurope (13)

Costs of SCI are higher than for comparable conditions such as dementiamultiple sclerosis cerebral palsy and bipolar disorder In Australia the lie-time costs (including the financial costs and burden-o-disease costs) were

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vi

International Perspectives on Spinal Cord Injury

estimated to be AUS$5 million or a person with paraplegia and AUS$95 mil-lion or a person with tetraplegia (14) Indirect costs such as lost earningsgenerally exceed direct costs

3 Barriers to services and environments restrict participationand undermine quality of life

Inadequate policy and provision Ofen appropriate policies and servicesare lacking in areas such as inclusive education accessible environments andrehabilitation For example in low- and middle- income countries only 5minus15o people have the assistive devices that they need (15) In a Netherlands studymore than hal o respondents with SCI were delayed leaving in-patient reha-bilitation due to delays in obtaining wheelchairs (16 )

Lack of funding One Nigerian study or instance showed that or more than40 o respondents with SCI acute treatment costs represented over 50 otheir annual income (17 ) Similarly cost is one o the main barriers when itcomes to assistive devices

Physical access barriers Homes schools workplaces and even hospitals areofen inaccessible to people who use wheelchairs Inaccessibility o transportis a major obstacle to participating in society particularly or those who livein rural areas Tis prevents people with SCI leaving hospital or nursing homeand becoming independent

Negative attitudes It may be alsely perceived or example that tetraplegia isa ate worse than death or that people in wheelchairs cannot work or cannothave intimate relations Even amily members may have negative attitudes and

low expectations Ofen prejudice arises rom lack o knowledge and lack ocontact Lack of knowledge Rehabilitation providers may lack knowledge and skills

relevant to SCI For example lack o expertise among service providers canhinder people with SCI receiving appropriate assistive technologies Primarycare staff may not know about preventable complications in SCI and diag-nostic overshadowing can mean that people with SCI do not receive screeningor treatment or their general health needs More evidence is needed on whatworks both in prevention and management o SCI

4 Spinal cord injury is preventable

Death and disability associated with road traffic crashes can be reduced through the sae systems approach which highlights what can be done toimprove road environments vehicle saety and driver behaviour (18) Forexample the worldrsquos first compulsory seat-belt laws were introduced in Aus-tralia in 1970 and in conjunction with government efforts to improve roaddesign and regulations on car saety there was a 4 pa drop in the annualincidence o SCI rom road traffic crashes (19)

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vii

Summary

Workplace codes on health and safety can reduce injuries caused in miningconstruction and agriculture

Limiting access to guns and knives prevents injuries and reduces cost to soci-ety Measures or limiting access include bans licensing schemes a mini-mum age or buyers background checks and sae storage requirements Tesemeasures have been successully implemented in Austria Brazil and somestates in the USA

Injuries from sporting and leisure activities can be minimized through betterdesign (eg o swimming pools play equipment and ski runs) saety inorma-tion (eg dangers o diving into shallow water training o rugby coaches) andsports-wide awareness

Early detection and treatment can reduce the prevalence of spinal B (20)as well as spinal tumours arising rom cancer

Improved nutrition reduces the incidence of spina bifida and other neuraltube defects (21) Voluntary periconceptional oral olate supplementation(three months beore and afer conception) has been shown to reduce the rateo inants being born with neural tube deects including spina bifida (22 23)Many countries that have a policy o supplementation o wheat flour with olicacid have also seen a all in the incidence o spina bifida (24ndash27 )

5 Spinal cord injury is survivable

Appropriate pre-hospital care is vital for immediate survival Quick rec-ognition early evaluation and appropriate management o suspected SCIare required Pre-hospital management in traumatic SCI requires a rapid

evaluation including measurement o vital signs and level o consciousnessinitiation o injury management including stabilization o vital unctionsimmobilization o the spine to preserve neurological unction until long-termspinal stability can be established and control o bleeding body tempera-ture and pain and prompt and sae access to the health-care system Peopleshould ideally arrive in an acute care setting within two hours which relieson adequate emergency and rescue services

Acute care ensures stabilization Acute care may involve surgical interventionor conservative management but accurate diagnosis o SCI and co-occurringconditions is the vital first step Many actors should be taken into consid-eration to determine the most appropriate management approach including

level o injury type o racture degree o instability presence o neural com-pression impact o other injuries surgical timing availability o resourcessuch as expertise and appropriate medical and surgical acilities and benefitsand risks In all cases people with SCI and their amily members should begiven an inormed choice between conservative and surgical management

Ongoing health care maintenance is required for survival and good qualityof life Te individual can avoid or survive the complications o SCI such asurinary tract inections and pressure ulcers remain healthy and enjoy a longand ull lie with access to ongoing health care People with SCI ofen have

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viii

International Perspectives on Spinal Cord Injury

a narrower margin o health or example a raised risk o chest inectionsand cardiovascular disease Without access to basic health care together withproducts such as catheters and appropriate cushions ollowed up by advice onhealthy living a person with SCI is more likely to die prematurely

6 Spinal cord injury need not prevent good health and socialinclusion

A person with SCI who has access to health care personal assistance i requiredand assistive devices should be able to return to study live independently makean economic contribution and participate in amily and community lie Once stabilized there is a need for access to relevant acute and post-acute

medical care and rehabilitation services to ensure that unctioning is maxi-mized and that the individual can become as independent as possible Tereare different models o service delivery but specialist centres have been shownto reduce costs result in ewer complications and result in ewer rehospi-talizations compared to nonspecialized services People with SCI give highpriority to achieving control o bladder and bowel unctions Terapy canenhance unction in lower and upper limbs and teach techniques or achiev-ing independence in everyday activities Mental health services and advice areimportant depression is associated with ewer improvements in unctioningand increased rate o health complications Inormation and support withsexual and reproductive health needs should also be part o rehabilitation

Appropriate assistive devices are a vital component of rehabilitation Forexample more than 90 o people with SCI require some orm o wheelchair

Tese must be appropriate or the individual and or the setting Other assis-tive technology needs include modifications in and around the home envi-ronmental control and sometimes communication systems or people withtetraplegia

Services should support return to education and employment Sel-helpgroups accessible buildings and transport vocational rehabilitation and anti-discrimination measures can ensure that children and adults can return tostudy live independently make an economic contribution and participate inamily and community lie

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ix

Summary

Recommendations

1 Improve health sector response to spinal cord injury

Tis requires building capacity o the health and rehabilitation workorce strength-ening prevention and early response services ensuring that appropriate medicalservices and rehabilitation services are available and accessible improving coordi-nation to enhance effectiveness and save costs extending health insurance cover-age so that SCI does not lead to catastrophic health expenditure and identiyingstrategies or the supply o appropriate assistive technology and health products

2 Empower people with spinal cord injury and their families

People with SCI need inormation so that they can take responsibility or theirown health care afer discharge Inormation should be shared with amily mem-bers during rehabilitation Support or amily members and other caregivers canprevent stress and burnout

In high-income countries an independent living model o personal assistancecan be empowering and cost-effective or people with SCI who have high sup-port needs Community-based rehabilitation (CBR) is important in low-incomesettings In all settings social networks sel-help groups and disabled peoplersquosorganizations can promote empowerment and participation Access to physicalactivities and sport can promote both physiological and psychological well-being

3 Challenge negative attitudes to people with spinal cord injury

As part o general disability awareness campaigns this can involve a range ointerventions including undergraduate education or doctors and other healthproessionals classroom activities to reduce stigma and awareness campaignsthrough media

4 Ensure that buildings transport and information areaccessible

Tis requires enorceable national access standards teaching architects anddesigners about universal design improving access to social housing promoting

ldquouniversally designedrdquo bus rapid transport mandating accessibility or privatetaxis and using organizations o persons with disabilities to consult on acces-sibility and monitor progress

5 Support employment and self-employment

Vocational training flexible working supported employment and community-based rehabilitation projects with a ocus on livelihood are all promising optionsor people with SCI returning to work Social protection schemes should be

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x

International Perspectives on Spinal Cord Injury

available depending on the setting and the economic status o the individual butshould not act as a disincentive to return to work

6 Promote appropriate research and data collection

Tere is a pressing need to both increase and improve routine data collectionand research on SCI Disaggregated statistics on SCI using standardized ICECIterminology can assist incident trend analysis and help in monitoring o policyresponses SCI registries which compile data directly rom hospitals togetherwith longitudinal population-based cohort studies covering major lie areas arethe best ways o collecting SCI data At service level data are required on costsoutcomes and costbenefits

7 Implement recommendations

Implementing these recommendations requires the involvement o different sec-tors ndash health education social protection labour transport and housing ndash anddifferent actors ndash governments civil society organizations (including organiza-tions o persons with disabilities) proessionals the private sector and peoplewith SCI and their amilies Sectors and actors need to work together because mul-tidisciplinary teamwork will maximize success It is essential that countries tailortheir actions to their specific contexts Where countries are limited by resourceconstraints some o the priority actions particularly those requiring technicalassistance and capacity-building can be included within the ramework o inter-national cooperation

Conclusion

While the incidence o traumatic and non-traumatic SCI can and should bereduced there will always be new cases o SCI SCI will continue to affect mainlyindividuals in the prime o lie Ensuring an adequate medical and rehabilitationresponse ollowed by supportive services and accessible environments wil l helpminimize the disruption to people with SCI and their amilies Tese measureswill also reduce the overall costs to society in terms o dependency and lost pro-ductivity and to the individual in terms o lower sel-esteem and impaired quality

o lie SCI is preventable survivable and need not preclude good health and socialinclusion But action by governments and other stakeholders is urgently requiredWithout effective action SCI will remain all too ofen a catastrophe

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xi

Summary

References1 United Nations Department of Economic and Social Affairs Population Division World population

prospec ts the 2012 revision DVD Edition 2013

2 Dahlberg A et al Prevalence of spinal cord injury in Helsinki Spinal Cord 2005 4347-50 doi

httpdxdoiorg101038sjsc3101616 PMID15520842

3 OrsquoConnor PJ Prevalence of spinal cord injury in Australia Spinal Cord 2005 4342-46 doi http

dxdoiorg101038sjsc3101666 PMID15326472

4 Noonan VK et al Incidence and prevalence of spinal cord injury in Canada a national per-

spective Neuroepidemiology 2012 38219-226 doi httpdxdoiorg101159000336014

PMID22555590

5 New PW Farry A Baxter D Noonan VK Prevalence of non-traumatic spinal cord injury in Victoria

Australia Spinal Cord 2013 5199-102 doi httpdxdoiorg101038sc201261 PMID22665222

6 Middleton JW et al Life expectancy after spinal cord injury a 50-year study Spinal Cord 2012

50803-811 doi httpdxdoiorg101038sc201255 PMID22584284

7 Gosselin RA Coppotelli C A follow-up study of patients with spinal cord injury in Sierra Leone

International Orthopaedics 2005 29330-332 doi httpdxdoiorg101007s00264-005-

0665-3 PMID16094542

8 Lidal IB et al Mortality after spinal cord injury in Norway Journal of Rehab ilitat ion Medicine 2007

39145-151 doi httpdxdoiorg10234016501977-0017 PMID17351697

9 Rathore MFA Spinal cord injuries in the developing world In JH Stone M Blouin eds

International Encyclopedia of Rehabilitation 2013 Available online httpcirriebuffaloedu

encyclopediaenarticle141

10 Hagen EM Rekand T Gilhus NE Groslashnning M Traumatic spinal cord injuriesndashincidence mecha-

nisms and course Tidsskrift for Den Norske Laegeforening 2012 132831-837 doi httpdxdoi

org104045tidsskr100859 PMID22511097

11 Leal-Filho MB et al Spinal cord injury epidemiological study of 386 cases with emphasis on

those patients admitted more than four hours after the trauma Arquivos de Neuro-Ps iquiatria

2008 66 2B365-368 doi httpdxdoiorg101590S0004-282X2008000300016 PMID18641873

12 Post MWM van Leeuwen CMC Psychosocial issues in spinal cord injury a review Spinal Cord

2012 50382-389 doi httpdxdoiorg101038sc2011182 PMID22270190

13 Young AE Murphy GC Employment status after spinal cord injury (1992ndash2005) a review with impli-

cations for interpretation evaluation further research and clinical practice International Journal of

Rehabilitation 2009 321-11 doi httpdxdoiorg101097MRR0b013e32831c8b19 PMID19057392

14 Access Economics for the Victorian Neurotrauma Initiative The economic cost of spinal cord

injury and traumatic brain injury in Australia 2009 (httpwwwtacvicgovauabout-the-tac

our-organisationresearchtac-neurotrauma-researchvnithe20economic20cost20of20spinal-

20cord20injury20and20traumatic20brain20injury20in20australiapdf accessed 9 January 2013)

15 WHO Guidelines on the provision of manual wheelchairs in less-resourced settings Geneva World

Health Organization 2008

16 Post MWM van Asbeck FW van Dijk AJ Schrijvers AJ Services for spinal cord injured availability and

satisfaction Spinal Cord 1997 35109-115 doi httpdxdoiorg101038sjsc3100362 PMID9044519

17 Kawu AA et al A cost analysis of conservative management of spinal cord-injured patients in

Nigeria Spinal Cord 2011 491134-1137 doi httpdxdoiorg101038sc201169 PMID2169127818 Peden M et al eds World report on road traffic injury prevention Geneva World Health

Organization 2004

19 OrsquoConnor P Trends in spinal cord injury Accident Analysis and Prevention 2006 3871ndash77 doi

httpdxdoiorg101016jaap200503025 PMID16111641

20 Harries AD et al The HIV-associated tuberculosis epidemicndashwhen will we act Lancet 2010

3751906-1919 doi httpdxdoiorg101016S0140-6736(10)60409-6 PMID20488516

21 Yi Y Lindemann M Colligs A Snowball C Economic burden of neural tube defects and impact of

prevention with folic acid a literature review European Journal of Pediatrics 2011 1701391-1400

doi httpdxdoiorg101007s00431-011-1492-8 PMID21594574

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International Perspectives on Spinal Cord Injury

22 Toriello HV Policy and Practice Guideline Committee of the American College of Medical

Genetics Policy statement on folic acid and neural tube defects Genetics in Medicine 2011

13593-596 doi httpdxdoiorg101097GIM0b013e31821d4188 PMID21552133

23 De-Regil LM Fernaacutendez-Gaxiola AC Dowswell T Pentildea-Rosas JP Effects and safety of pericon-

ceptional folate supplementation for preventing birth defects Cochrane Database of Systematic

Reviews 2010 6CD007950 PMID2092776724 Flour Fortification Initiative FFI Database Atlanta 2012 (httpwwwsphemoryeduwheatflour

globalmapphp accessed 28 May 2012)

25 Williams LJ et al Decline in the prevalence of spina bifida and anencephaly by raceethnicity 1995ndash

2002 Pediatrics 2005 116580-586 doi httpdxdoiorg101542peds2005-0592 PMID16140696

26 Berry RJ Bailey L Mulinare J Bower C Folic Acid Working Group Fortification of flour with folic

acid Food and Nutrition Bulletin 2010 31 SupplS22-S35 PMID20629350

27 Alasfoor D Elsayed MK Mohammed AJ Spina bifida and birth outcome before and after

fortification of flour with iron and folic acid in Oman Eastern Mediterranean Health Journal 2010

16533-538 PMID20799554

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WHONMHVIP1303

ldquoSpinal cord injury need not be a death sentence But this requires effective

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 to

improved understanding and therefore better practicerdquo

SHUAIB CHALKEN UN SPECIAL RAPPORTEUR ON DISABILITY

ldquoSpina bifida is no obstacle to a full and useful life Irsquove been a Paralympic championa wife a mother a broadcaster and a member of the upper house of the British

Parliament Itrsquos taken grit and dedication but Irsquom 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

benefits I hope that policy-makers everywhere will read this report understand

how to tackle the challenge of spinal cord injury and take the necessary actionsrdquo

TANNI GREY983085THOMPSON PARALYMPIC MEDALLIST AND ME MBER OF UK HOUSE O F LORDS

ldquoDisability 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

lsquogenerouslyrsquo gives what he does not need while solidarity is given between equals

in a horizontal way among human beings who are different but equal in their

rights We need to eliminate the barriers construct a way to liberty the liberty of

being different This is true inclusionrdquo

LENIacuteN MORENO FORMER VICE983085PRESIDENT OF THE REPUBLIC OF ECUADOR

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i

Preface

Te international symbol o disability is the wheelchair and the stereotype o a person withdisability is a young man with paraplegia While these images are very amiliar at the sametime we know that this is not an accurate picture o the diversity o global disability Whereas15 o the population are affected by disability less than 01 o the population have spinalcord injury

However spinal cord injury is particularly devastating or two reasons First it ofenstrikes out o the blue A driver is tired and inebriated late at night and veers off the roadresulting in a roll-over crash and consequent tetraplegia Te teenager dives into a pool onlyto break her neck A workman alls rom scaffolding and becomes paraplegic An earth-quake strikes and a personrsquos back is injured by alling masonry A middle aged woman isparalysed due to pressure rom a tumour In all these examples someone in the prime otheir lie becomes disabled in an instant None o us are immune rom this risk

Second the consequences o SCI are commonly either premature mortality or at bestsocial exclusion rauma care systems are requently inadequate For many access to high

quality rehabilitation and assistive devices is unavailable Ongoing health care is lackingwhich means that a person with spinal cord injury is likely to die within a ew years romurinary tract inections or pressure sores Even when individuals are lucky enough to receivethe health and rehabilitation care they require they are likely to be denied access to the edu-cation and employment which could enable them to regain their independence and make acontribution to their amilies and their society

None o these devastating outcomes is necessary Te message o this report is thatspinal cord injury is preventable that spinal cord injury is survivable and that spinal cordinjury need not prevent good quality o lie and ull contribution to society Te report con-tains the best available scientific evidence about strategies to reduce the incidence o spinalcord injury particularly rom traumatic causes Te report also discusses how the health

system can respond effectively to people who are injured Finally the report discusses howpersonal adjustment and relationships can be supported how barriers in the environmentcan be removed and how individuals with spinal cord injury can gain access to schoolsuniversities and workplaces

We can turn spinal cord injury rom a threat into an opportunity Tis has two dimen-sions First spinal cord injury challenges almost every aspect o the health system So ena-bling health systems to react effectively to the challenge o spinal cord injury will mean thatthey can respond better to many other types o i llness and injury Second a world which ishospitable to people with spinal cord injury in particular will inevitably be more inclusive

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ii

International Perspectives on Spinal Cord Injury

o disability in general Improved accessibility and greater availability o assistivedevices wil l help millions o the worldrsquos disabled and older people And finally ocourse the word ldquoopportunityrdquo signals the better lives and the productive con-tribution to which people with spinal cord injury rightly aspire and which wecan help them to attain i only we have the political will and the organizationalcommitment As earlier with the World report on disability so now with Interna-tional Perspectives on Spinal Cord Injury this report has potential to change livesand open doors I urge the worldrsquos policy-makers to pay attention to its findings

Dr Margaret ChanDirector-General

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iii

Spinal cord injury (SCI) is a medically complex and lie-disrupting conditionSCI reers to damage to the spinal cord arising rom trauma ndash such as carcrash ndash or rom non-traumatic disease or degeneration ndash such as tuberculosis(B) SCI encompasses the baby born with spina biida and the constructionworker who alls rom scaolding It includes the victim o conlict or gun

violence and the older person who develops SCI as a result o osteoporosisor a tumour

SCI has costly consequences both or individuals and society People arelet dependent are excluded rom school and are less likely to be employedWorst o all they risk premature death SCI is both a public health and humanrights chal lenge With the right policy responses it is possible to live thriveand contribute with SCI anywhere in the world People with SCI are peoplewith disabilities and they are entitled to the same human rights and respectas all other people with disabilities Once a person with SCI has had their

immediate health needs met social and environmental barriers are the mainobstacles to successul unctioning and inclusion in society It is essential toensure that health services education transport and employment are avail-able and accessible to people with SCI alongside other people with disabi litiesSCI wil l always be l ie-changing but it need not be a tragedy and it need notbe a burden

he aims o International Perspectives on Spinal Cord Injury are to assemble and summarize inormation on SCI in particular the epidemiol-

ogy services interventions and policies that are relevant together with thelived experience o people with SCI across the lie course and throughoutthe world

make recommendations or actions based on this evidence that are consist-ent with the aspirations or inclusion and participation as expressed in theConvention on the Rights of Persons with Disabilities

Summary

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International Perspectives on Spinal Cord Injury

Key findings

1 Spinal cord injury is a significant public health issue

Te global incidence of SCI both traumatic and non-traumatic is likely tobe between 40 and 80 cases per million population Based on the 2012 worldpopulation estimates this means that every year between 250 000 and 500 000people suffer a spinal cord injury (1) Te incidence o traumatic SCI (SCI)reported in country-level studies ranges rom 13 per million to 53 per millionHistorically up to 90 o SCI has been traumatic in origin but data rom themost recent studies indicate a slight trend towards an increase in the share onon-traumatic SCI (NSCI) Available studies report an incidence o NSCIo 26 per million

No global estimates of SCI prevalence are available Data on SCI incidenceand prevalence are inadequate and inconsistent Even in developed countriesfigures vary due to differences in case ascertainment and modelling method-ology as well as to real differences in epidemiology SCI prevalence figuresrange rom 280 per million population in Finland (2) to 681 per million inAustralia (3) to 1298 per million in Canada (4) NSCI prevalence or adultsand children in Australia is 367 per million (5) and in Canada 1227 per mil-lion (4) Overall combined SCI and NSCI prevalence or Canada in 2010was 2525 per million population

Increasing prevalence of SCI in some countries Tere is a trend towardsincreasing prevalence o SCI in high-income countries due to increases in sur-

vival rates which have reached approximately 70 o general population lie

expectancy or tetraplegics and 88 or people with complete paraplegia (6 )However survival rates in low- and middle-income countries remain poor ndashas low as one to two years afer injury in some settings minus and this contributesto lower prevalence (7 ) Global ageing is likely to increase rates o NSCI andthere is a slight trend or NSCI to increase as a proportion o total SCI

Changing profile of victims Te SCI incidence rate peaks in young adulthoodand to a lesser extent in old age While young males dominate the statisticsthe profile is changing to include more older people and more women Over-all age at time o injury is increasing

Road traffic crashes falls and violence are the main three causes of SCI Road traffic injuries predominate in the Arican Region accounting or nearly

70 o cases and are a prominent underlying cause o SCI in other WHOregions as well ranging between 40 in the South-East Asia Region and 55in the Western Pacific Region Falls the second leading cause account or

just over 40 o all cases in the South-East Asia and Eastern MediterraneanRegions Te Arican Region reports the lowest percentage (14) o alls withthe other WHO regions showing percentages between 27 and 36 Rates oassault including violence and sel-harm mostly rom firearms as a causeo SCI vary considerably across regions the Americas Arican and EasternMediterranean Regions reporting the highest percentages o 14 12 and

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v

Summary

11 respectively Work-related accidents contribute to at least 15 o all SCIcases Across all regions sport and leisure activities contribute less than 10o all cases o SCI Attempted suicide has been shown to contribute to over10 o SCI cases in some countries uberculosis may account or up to 20o all NSCI cases in some contexts

People with SCI die earlier Studies have indicated that people with SCI are2 to 5 times more likely to die prematurely than people without SCI Peoplewith tetraplegia are at higher risk than people with paraplegia and peoplewith complete lesions are at higher risk than people with incomplete lesionsMortality is particularly high in the first year afer injury (8) and mortalityrates are strongly affected by the capacity o the health-care system especiallyemergency care Studies on in-hospital average mortality rates in low-incomecountries are at least three times as high as those in the high-resource settings

In low-income countries preventable secondary conditions remain themain causes of death for people with SCI (9) In high-income countries themain causes o death or people with SCI have changed over recent decades(10 11) with urological complications in decline and the leading cause odeath shifing to respiratory problems pneumonia or influenza in particularHeart disease suicide and neurological problems are other associated causeso death

2 Personal and social impacts of spinal cord injury areconsiderable

SCI has a debilitating psychological impact 20ndash30 o people with SCI show

clinically significant symptoms o depression which is substantially higherthan the general population (12) although the majority o people eventuallyadapt well to SCI

People with SCI have a narrower margin of health due partly to preventablecomplications such as urinary tract inections and pressure sores

SCI is associated with family breakdown but also family resilience Imme-diately afer injury SCI can have a negative impact on personal relationshipsand is associated with a higher rate o divorce However post-SCI relation-ships generally do better Carers o children and young people with spinabifida or traumatic SCI typically experience isolation and stress

Lower participation in school Children and young people with spina bifida

or acquired SCI are less likely to attend school and less likely to participate intertiary education Tey ace obstacles in the transition between school andtertiary education and between education and employment

SCI is associated with lower rates of economic participation Average globalemployment rates or people with SCI are only 37 with a high o 51 inEurope (13)

Costs of SCI are higher than for comparable conditions such as dementiamultiple sclerosis cerebral palsy and bipolar disorder In Australia the lie-time costs (including the financial costs and burden-o-disease costs) were

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vi

International Perspectives on Spinal Cord Injury

estimated to be AUS$5 million or a person with paraplegia and AUS$95 mil-lion or a person with tetraplegia (14) Indirect costs such as lost earningsgenerally exceed direct costs

3 Barriers to services and environments restrict participationand undermine quality of life

Inadequate policy and provision Ofen appropriate policies and servicesare lacking in areas such as inclusive education accessible environments andrehabilitation For example in low- and middle- income countries only 5minus15o people have the assistive devices that they need (15) In a Netherlands studymore than hal o respondents with SCI were delayed leaving in-patient reha-bilitation due to delays in obtaining wheelchairs (16 )

Lack of funding One Nigerian study or instance showed that or more than40 o respondents with SCI acute treatment costs represented over 50 otheir annual income (17 ) Similarly cost is one o the main barriers when itcomes to assistive devices

Physical access barriers Homes schools workplaces and even hospitals areofen inaccessible to people who use wheelchairs Inaccessibility o transportis a major obstacle to participating in society particularly or those who livein rural areas Tis prevents people with SCI leaving hospital or nursing homeand becoming independent

Negative attitudes It may be alsely perceived or example that tetraplegia isa ate worse than death or that people in wheelchairs cannot work or cannothave intimate relations Even amily members may have negative attitudes and

low expectations Ofen prejudice arises rom lack o knowledge and lack ocontact Lack of knowledge Rehabilitation providers may lack knowledge and skills

relevant to SCI For example lack o expertise among service providers canhinder people with SCI receiving appropriate assistive technologies Primarycare staff may not know about preventable complications in SCI and diag-nostic overshadowing can mean that people with SCI do not receive screeningor treatment or their general health needs More evidence is needed on whatworks both in prevention and management o SCI

4 Spinal cord injury is preventable

Death and disability associated with road traffic crashes can be reduced through the sae systems approach which highlights what can be done toimprove road environments vehicle saety and driver behaviour (18) Forexample the worldrsquos first compulsory seat-belt laws were introduced in Aus-tralia in 1970 and in conjunction with government efforts to improve roaddesign and regulations on car saety there was a 4 pa drop in the annualincidence o SCI rom road traffic crashes (19)

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vii

Summary

Workplace codes on health and safety can reduce injuries caused in miningconstruction and agriculture

Limiting access to guns and knives prevents injuries and reduces cost to soci-ety Measures or limiting access include bans licensing schemes a mini-mum age or buyers background checks and sae storage requirements Tesemeasures have been successully implemented in Austria Brazil and somestates in the USA

Injuries from sporting and leisure activities can be minimized through betterdesign (eg o swimming pools play equipment and ski runs) saety inorma-tion (eg dangers o diving into shallow water training o rugby coaches) andsports-wide awareness

Early detection and treatment can reduce the prevalence of spinal B (20)as well as spinal tumours arising rom cancer

Improved nutrition reduces the incidence of spina bifida and other neuraltube defects (21) Voluntary periconceptional oral olate supplementation(three months beore and afer conception) has been shown to reduce the rateo inants being born with neural tube deects including spina bifida (22 23)Many countries that have a policy o supplementation o wheat flour with olicacid have also seen a all in the incidence o spina bifida (24ndash27 )

5 Spinal cord injury is survivable

Appropriate pre-hospital care is vital for immediate survival Quick rec-ognition early evaluation and appropriate management o suspected SCIare required Pre-hospital management in traumatic SCI requires a rapid

evaluation including measurement o vital signs and level o consciousnessinitiation o injury management including stabilization o vital unctionsimmobilization o the spine to preserve neurological unction until long-termspinal stability can be established and control o bleeding body tempera-ture and pain and prompt and sae access to the health-care system Peopleshould ideally arrive in an acute care setting within two hours which relieson adequate emergency and rescue services

Acute care ensures stabilization Acute care may involve surgical interventionor conservative management but accurate diagnosis o SCI and co-occurringconditions is the vital first step Many actors should be taken into consid-eration to determine the most appropriate management approach including

level o injury type o racture degree o instability presence o neural com-pression impact o other injuries surgical timing availability o resourcessuch as expertise and appropriate medical and surgical acilities and benefitsand risks In all cases people with SCI and their amily members should begiven an inormed choice between conservative and surgical management

Ongoing health care maintenance is required for survival and good qualityof life Te individual can avoid or survive the complications o SCI such asurinary tract inections and pressure ulcers remain healthy and enjoy a longand ull lie with access to ongoing health care People with SCI ofen have

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viii

International Perspectives on Spinal Cord Injury

a narrower margin o health or example a raised risk o chest inectionsand cardiovascular disease Without access to basic health care together withproducts such as catheters and appropriate cushions ollowed up by advice onhealthy living a person with SCI is more likely to die prematurely

6 Spinal cord injury need not prevent good health and socialinclusion

A person with SCI who has access to health care personal assistance i requiredand assistive devices should be able to return to study live independently makean economic contribution and participate in amily and community lie Once stabilized there is a need for access to relevant acute and post-acute

medical care and rehabilitation services to ensure that unctioning is maxi-mized and that the individual can become as independent as possible Tereare different models o service delivery but specialist centres have been shownto reduce costs result in ewer complications and result in ewer rehospi-talizations compared to nonspecialized services People with SCI give highpriority to achieving control o bladder and bowel unctions Terapy canenhance unction in lower and upper limbs and teach techniques or achiev-ing independence in everyday activities Mental health services and advice areimportant depression is associated with ewer improvements in unctioningand increased rate o health complications Inormation and support withsexual and reproductive health needs should also be part o rehabilitation

Appropriate assistive devices are a vital component of rehabilitation Forexample more than 90 o people with SCI require some orm o wheelchair

Tese must be appropriate or the individual and or the setting Other assis-tive technology needs include modifications in and around the home envi-ronmental control and sometimes communication systems or people withtetraplegia

Services should support return to education and employment Sel-helpgroups accessible buildings and transport vocational rehabilitation and anti-discrimination measures can ensure that children and adults can return tostudy live independently make an economic contribution and participate inamily and community lie

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ix

Summary

Recommendations

1 Improve health sector response to spinal cord injury

Tis requires building capacity o the health and rehabilitation workorce strength-ening prevention and early response services ensuring that appropriate medicalservices and rehabilitation services are available and accessible improving coordi-nation to enhance effectiveness and save costs extending health insurance cover-age so that SCI does not lead to catastrophic health expenditure and identiyingstrategies or the supply o appropriate assistive technology and health products

2 Empower people with spinal cord injury and their families

People with SCI need inormation so that they can take responsibility or theirown health care afer discharge Inormation should be shared with amily mem-bers during rehabilitation Support or amily members and other caregivers canprevent stress and burnout

In high-income countries an independent living model o personal assistancecan be empowering and cost-effective or people with SCI who have high sup-port needs Community-based rehabilitation (CBR) is important in low-incomesettings In all settings social networks sel-help groups and disabled peoplersquosorganizations can promote empowerment and participation Access to physicalactivities and sport can promote both physiological and psychological well-being

3 Challenge negative attitudes to people with spinal cord injury

As part o general disability awareness campaigns this can involve a range ointerventions including undergraduate education or doctors and other healthproessionals classroom activities to reduce stigma and awareness campaignsthrough media

4 Ensure that buildings transport and information areaccessible

Tis requires enorceable national access standards teaching architects anddesigners about universal design improving access to social housing promoting

ldquouniversally designedrdquo bus rapid transport mandating accessibility or privatetaxis and using organizations o persons with disabilities to consult on acces-sibility and monitor progress

5 Support employment and self-employment

Vocational training flexible working supported employment and community-based rehabilitation projects with a ocus on livelihood are all promising optionsor people with SCI returning to work Social protection schemes should be

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International Perspectives on Spinal Cord Injury

available depending on the setting and the economic status o the individual butshould not act as a disincentive to return to work

6 Promote appropriate research and data collection

Tere is a pressing need to both increase and improve routine data collectionand research on SCI Disaggregated statistics on SCI using standardized ICECIterminology can assist incident trend analysis and help in monitoring o policyresponses SCI registries which compile data directly rom hospitals togetherwith longitudinal population-based cohort studies covering major lie areas arethe best ways o collecting SCI data At service level data are required on costsoutcomes and costbenefits

7 Implement recommendations

Implementing these recommendations requires the involvement o different sec-tors ndash health education social protection labour transport and housing ndash anddifferent actors ndash governments civil society organizations (including organiza-tions o persons with disabilities) proessionals the private sector and peoplewith SCI and their amilies Sectors and actors need to work together because mul-tidisciplinary teamwork will maximize success It is essential that countries tailortheir actions to their specific contexts Where countries are limited by resourceconstraints some o the priority actions particularly those requiring technicalassistance and capacity-building can be included within the ramework o inter-national cooperation

Conclusion

While the incidence o traumatic and non-traumatic SCI can and should bereduced there will always be new cases o SCI SCI will continue to affect mainlyindividuals in the prime o lie Ensuring an adequate medical and rehabilitationresponse ollowed by supportive services and accessible environments wil l helpminimize the disruption to people with SCI and their amilies Tese measureswill also reduce the overall costs to society in terms o dependency and lost pro-ductivity and to the individual in terms o lower sel-esteem and impaired quality

o lie SCI is preventable survivable and need not preclude good health and socialinclusion But action by governments and other stakeholders is urgently requiredWithout effective action SCI will remain all too ofen a catastrophe

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xi

Summary

References1 United Nations Department of Economic and Social Affairs Population Division World population

prospec ts the 2012 revision DVD Edition 2013

2 Dahlberg A et al Prevalence of spinal cord injury in Helsinki Spinal Cord 2005 4347-50 doi

httpdxdoiorg101038sjsc3101616 PMID15520842

3 OrsquoConnor PJ Prevalence of spinal cord injury in Australia Spinal Cord 2005 4342-46 doi http

dxdoiorg101038sjsc3101666 PMID15326472

4 Noonan VK et al Incidence and prevalence of spinal cord injury in Canada a national per-

spective Neuroepidemiology 2012 38219-226 doi httpdxdoiorg101159000336014

PMID22555590

5 New PW Farry A Baxter D Noonan VK Prevalence of non-traumatic spinal cord injury in Victoria

Australia Spinal Cord 2013 5199-102 doi httpdxdoiorg101038sc201261 PMID22665222

6 Middleton JW et al Life expectancy after spinal cord injury a 50-year study Spinal Cord 2012

50803-811 doi httpdxdoiorg101038sc201255 PMID22584284

7 Gosselin RA Coppotelli C A follow-up study of patients with spinal cord injury in Sierra Leone

International Orthopaedics 2005 29330-332 doi httpdxdoiorg101007s00264-005-

0665-3 PMID16094542

8 Lidal IB et al Mortality after spinal cord injury in Norway Journal of Rehab ilitat ion Medicine 2007

39145-151 doi httpdxdoiorg10234016501977-0017 PMID17351697

9 Rathore MFA Spinal cord injuries in the developing world In JH Stone M Blouin eds

International Encyclopedia of Rehabilitation 2013 Available online httpcirriebuffaloedu

encyclopediaenarticle141

10 Hagen EM Rekand T Gilhus NE Groslashnning M Traumatic spinal cord injuriesndashincidence mecha-

nisms and course Tidsskrift for Den Norske Laegeforening 2012 132831-837 doi httpdxdoi

org104045tidsskr100859 PMID22511097

11 Leal-Filho MB et al Spinal cord injury epidemiological study of 386 cases with emphasis on

those patients admitted more than four hours after the trauma Arquivos de Neuro-Ps iquiatria

2008 66 2B365-368 doi httpdxdoiorg101590S0004-282X2008000300016 PMID18641873

12 Post MWM van Leeuwen CMC Psychosocial issues in spinal cord injury a review Spinal Cord

2012 50382-389 doi httpdxdoiorg101038sc2011182 PMID22270190

13 Young AE Murphy GC Employment status after spinal cord injury (1992ndash2005) a review with impli-

cations for interpretation evaluation further research and clinical practice International Journal of

Rehabilitation 2009 321-11 doi httpdxdoiorg101097MRR0b013e32831c8b19 PMID19057392

14 Access Economics for the Victorian Neurotrauma Initiative The economic cost of spinal cord

injury and traumatic brain injury in Australia 2009 (httpwwwtacvicgovauabout-the-tac

our-organisationresearchtac-neurotrauma-researchvnithe20economic20cost20of20spinal-

20cord20injury20and20traumatic20brain20injury20in20australiapdf accessed 9 January 2013)

15 WHO Guidelines on the provision of manual wheelchairs in less-resourced settings Geneva World

Health Organization 2008

16 Post MWM van Asbeck FW van Dijk AJ Schrijvers AJ Services for spinal cord injured availability and

satisfaction Spinal Cord 1997 35109-115 doi httpdxdoiorg101038sjsc3100362 PMID9044519

17 Kawu AA et al A cost analysis of conservative management of spinal cord-injured patients in

Nigeria Spinal Cord 2011 491134-1137 doi httpdxdoiorg101038sc201169 PMID2169127818 Peden M et al eds World report on road traffic injury prevention Geneva World Health

Organization 2004

19 OrsquoConnor P Trends in spinal cord injury Accident Analysis and Prevention 2006 3871ndash77 doi

httpdxdoiorg101016jaap200503025 PMID16111641

20 Harries AD et al The HIV-associated tuberculosis epidemicndashwhen will we act Lancet 2010

3751906-1919 doi httpdxdoiorg101016S0140-6736(10)60409-6 PMID20488516

21 Yi Y Lindemann M Colligs A Snowball C Economic burden of neural tube defects and impact of

prevention with folic acid a literature review European Journal of Pediatrics 2011 1701391-1400

doi httpdxdoiorg101007s00431-011-1492-8 PMID21594574

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International Perspectives on Spinal Cord Injury

22 Toriello HV Policy and Practice Guideline Committee of the American College of Medical

Genetics Policy statement on folic acid and neural tube defects Genetics in Medicine 2011

13593-596 doi httpdxdoiorg101097GIM0b013e31821d4188 PMID21552133

23 De-Regil LM Fernaacutendez-Gaxiola AC Dowswell T Pentildea-Rosas JP Effects and safety of pericon-

ceptional folate supplementation for preventing birth defects Cochrane Database of Systematic

Reviews 2010 6CD007950 PMID2092776724 Flour Fortification Initiative FFI Database Atlanta 2012 (httpwwwsphemoryeduwheatflour

globalmapphp accessed 28 May 2012)

25 Williams LJ et al Decline in the prevalence of spina bifida and anencephaly by raceethnicity 1995ndash

2002 Pediatrics 2005 116580-586 doi httpdxdoiorg101542peds2005-0592 PMID16140696

26 Berry RJ Bailey L Mulinare J Bower C Folic Acid Working Group Fortification of flour with folic

acid Food and Nutrition Bulletin 2010 31 SupplS22-S35 PMID20629350

27 Alasfoor D Elsayed MK Mohammed AJ Spina bifida and birth outcome before and after

fortification of flour with iron and folic acid in Oman Eastern Mediterranean Health Journal 2010

16533-538 PMID20799554

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WHONMHVIP1303

ldquoSpinal cord injury need not be a death sentence But this requires effective

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 to

improved understanding and therefore better practicerdquo

SHUAIB CHALKEN UN SPECIAL RAPPORTEUR ON DISABILITY

ldquoSpina bifida is no obstacle to a full and useful life Irsquove been a Paralympic championa wife a mother a broadcaster and a member of the upper house of the British

Parliament Itrsquos taken grit and dedication but Irsquom 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

benefits I hope that policy-makers everywhere will read this report understand

how to tackle the challenge of spinal cord injury and take the necessary actionsrdquo

TANNI GREY983085THOMPSON PARALYMPIC MEDALLIST AND ME MBER OF UK HOUSE O F LORDS

ldquoDisability 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

lsquogenerouslyrsquo gives what he does not need while solidarity is given between equals

in a horizontal way among human beings who are different but equal in their

rights We need to eliminate the barriers construct a way to liberty the liberty of

being different This is true inclusionrdquo

LENIacuteN MORENO FORMER VICE983085PRESIDENT OF THE REPUBLIC OF ECUADOR

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International Perspectives on Spinal Cord Injury

o disability in general Improved accessibility and greater availability o assistivedevices wil l help millions o the worldrsquos disabled and older people And finally ocourse the word ldquoopportunityrdquo signals the better lives and the productive con-tribution to which people with spinal cord injury rightly aspire and which wecan help them to attain i only we have the political will and the organizationalcommitment As earlier with the World report on disability so now with Interna-tional Perspectives on Spinal Cord Injury this report has potential to change livesand open doors I urge the worldrsquos policy-makers to pay attention to its findings

Dr Margaret ChanDirector-General

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iii

Spinal cord injury (SCI) is a medically complex and lie-disrupting conditionSCI reers to damage to the spinal cord arising rom trauma ndash such as carcrash ndash or rom non-traumatic disease or degeneration ndash such as tuberculosis(B) SCI encompasses the baby born with spina biida and the constructionworker who alls rom scaolding It includes the victim o conlict or gun

violence and the older person who develops SCI as a result o osteoporosisor a tumour

SCI has costly consequences both or individuals and society People arelet dependent are excluded rom school and are less likely to be employedWorst o all they risk premature death SCI is both a public health and humanrights chal lenge With the right policy responses it is possible to live thriveand contribute with SCI anywhere in the world People with SCI are peoplewith disabilities and they are entitled to the same human rights and respectas all other people with disabilities Once a person with SCI has had their

immediate health needs met social and environmental barriers are the mainobstacles to successul unctioning and inclusion in society It is essential toensure that health services education transport and employment are avail-able and accessible to people with SCI alongside other people with disabi litiesSCI wil l always be l ie-changing but it need not be a tragedy and it need notbe a burden

he aims o International Perspectives on Spinal Cord Injury are to assemble and summarize inormation on SCI in particular the epidemiol-

ogy services interventions and policies that are relevant together with thelived experience o people with SCI across the lie course and throughoutthe world

make recommendations or actions based on this evidence that are consist-ent with the aspirations or inclusion and participation as expressed in theConvention on the Rights of Persons with Disabilities

Summary

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iv

International Perspectives on Spinal Cord Injury

Key findings

1 Spinal cord injury is a significant public health issue

Te global incidence of SCI both traumatic and non-traumatic is likely tobe between 40 and 80 cases per million population Based on the 2012 worldpopulation estimates this means that every year between 250 000 and 500 000people suffer a spinal cord injury (1) Te incidence o traumatic SCI (SCI)reported in country-level studies ranges rom 13 per million to 53 per millionHistorically up to 90 o SCI has been traumatic in origin but data rom themost recent studies indicate a slight trend towards an increase in the share onon-traumatic SCI (NSCI) Available studies report an incidence o NSCIo 26 per million

No global estimates of SCI prevalence are available Data on SCI incidenceand prevalence are inadequate and inconsistent Even in developed countriesfigures vary due to differences in case ascertainment and modelling method-ology as well as to real differences in epidemiology SCI prevalence figuresrange rom 280 per million population in Finland (2) to 681 per million inAustralia (3) to 1298 per million in Canada (4) NSCI prevalence or adultsand children in Australia is 367 per million (5) and in Canada 1227 per mil-lion (4) Overall combined SCI and NSCI prevalence or Canada in 2010was 2525 per million population

Increasing prevalence of SCI in some countries Tere is a trend towardsincreasing prevalence o SCI in high-income countries due to increases in sur-

vival rates which have reached approximately 70 o general population lie

expectancy or tetraplegics and 88 or people with complete paraplegia (6 )However survival rates in low- and middle-income countries remain poor ndashas low as one to two years afer injury in some settings minus and this contributesto lower prevalence (7 ) Global ageing is likely to increase rates o NSCI andthere is a slight trend or NSCI to increase as a proportion o total SCI

Changing profile of victims Te SCI incidence rate peaks in young adulthoodand to a lesser extent in old age While young males dominate the statisticsthe profile is changing to include more older people and more women Over-all age at time o injury is increasing

Road traffic crashes falls and violence are the main three causes of SCI Road traffic injuries predominate in the Arican Region accounting or nearly

70 o cases and are a prominent underlying cause o SCI in other WHOregions as well ranging between 40 in the South-East Asia Region and 55in the Western Pacific Region Falls the second leading cause account or

just over 40 o all cases in the South-East Asia and Eastern MediterraneanRegions Te Arican Region reports the lowest percentage (14) o alls withthe other WHO regions showing percentages between 27 and 36 Rates oassault including violence and sel-harm mostly rom firearms as a causeo SCI vary considerably across regions the Americas Arican and EasternMediterranean Regions reporting the highest percentages o 14 12 and

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v

Summary

11 respectively Work-related accidents contribute to at least 15 o all SCIcases Across all regions sport and leisure activities contribute less than 10o all cases o SCI Attempted suicide has been shown to contribute to over10 o SCI cases in some countries uberculosis may account or up to 20o all NSCI cases in some contexts

People with SCI die earlier Studies have indicated that people with SCI are2 to 5 times more likely to die prematurely than people without SCI Peoplewith tetraplegia are at higher risk than people with paraplegia and peoplewith complete lesions are at higher risk than people with incomplete lesionsMortality is particularly high in the first year afer injury (8) and mortalityrates are strongly affected by the capacity o the health-care system especiallyemergency care Studies on in-hospital average mortality rates in low-incomecountries are at least three times as high as those in the high-resource settings

In low-income countries preventable secondary conditions remain themain causes of death for people with SCI (9) In high-income countries themain causes o death or people with SCI have changed over recent decades(10 11) with urological complications in decline and the leading cause odeath shifing to respiratory problems pneumonia or influenza in particularHeart disease suicide and neurological problems are other associated causeso death

2 Personal and social impacts of spinal cord injury areconsiderable

SCI has a debilitating psychological impact 20ndash30 o people with SCI show

clinically significant symptoms o depression which is substantially higherthan the general population (12) although the majority o people eventuallyadapt well to SCI

People with SCI have a narrower margin of health due partly to preventablecomplications such as urinary tract inections and pressure sores

SCI is associated with family breakdown but also family resilience Imme-diately afer injury SCI can have a negative impact on personal relationshipsand is associated with a higher rate o divorce However post-SCI relation-ships generally do better Carers o children and young people with spinabifida or traumatic SCI typically experience isolation and stress

Lower participation in school Children and young people with spina bifida

or acquired SCI are less likely to attend school and less likely to participate intertiary education Tey ace obstacles in the transition between school andtertiary education and between education and employment

SCI is associated with lower rates of economic participation Average globalemployment rates or people with SCI are only 37 with a high o 51 inEurope (13)

Costs of SCI are higher than for comparable conditions such as dementiamultiple sclerosis cerebral palsy and bipolar disorder In Australia the lie-time costs (including the financial costs and burden-o-disease costs) were

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vi

International Perspectives on Spinal Cord Injury

estimated to be AUS$5 million or a person with paraplegia and AUS$95 mil-lion or a person with tetraplegia (14) Indirect costs such as lost earningsgenerally exceed direct costs

3 Barriers to services and environments restrict participationand undermine quality of life

Inadequate policy and provision Ofen appropriate policies and servicesare lacking in areas such as inclusive education accessible environments andrehabilitation For example in low- and middle- income countries only 5minus15o people have the assistive devices that they need (15) In a Netherlands studymore than hal o respondents with SCI were delayed leaving in-patient reha-bilitation due to delays in obtaining wheelchairs (16 )

Lack of funding One Nigerian study or instance showed that or more than40 o respondents with SCI acute treatment costs represented over 50 otheir annual income (17 ) Similarly cost is one o the main barriers when itcomes to assistive devices

Physical access barriers Homes schools workplaces and even hospitals areofen inaccessible to people who use wheelchairs Inaccessibility o transportis a major obstacle to participating in society particularly or those who livein rural areas Tis prevents people with SCI leaving hospital or nursing homeand becoming independent

Negative attitudes It may be alsely perceived or example that tetraplegia isa ate worse than death or that people in wheelchairs cannot work or cannothave intimate relations Even amily members may have negative attitudes and

low expectations Ofen prejudice arises rom lack o knowledge and lack ocontact Lack of knowledge Rehabilitation providers may lack knowledge and skills

relevant to SCI For example lack o expertise among service providers canhinder people with SCI receiving appropriate assistive technologies Primarycare staff may not know about preventable complications in SCI and diag-nostic overshadowing can mean that people with SCI do not receive screeningor treatment or their general health needs More evidence is needed on whatworks both in prevention and management o SCI

4 Spinal cord injury is preventable

Death and disability associated with road traffic crashes can be reduced through the sae systems approach which highlights what can be done toimprove road environments vehicle saety and driver behaviour (18) Forexample the worldrsquos first compulsory seat-belt laws were introduced in Aus-tralia in 1970 and in conjunction with government efforts to improve roaddesign and regulations on car saety there was a 4 pa drop in the annualincidence o SCI rom road traffic crashes (19)

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vii

Summary

Workplace codes on health and safety can reduce injuries caused in miningconstruction and agriculture

Limiting access to guns and knives prevents injuries and reduces cost to soci-ety Measures or limiting access include bans licensing schemes a mini-mum age or buyers background checks and sae storage requirements Tesemeasures have been successully implemented in Austria Brazil and somestates in the USA

Injuries from sporting and leisure activities can be minimized through betterdesign (eg o swimming pools play equipment and ski runs) saety inorma-tion (eg dangers o diving into shallow water training o rugby coaches) andsports-wide awareness

Early detection and treatment can reduce the prevalence of spinal B (20)as well as spinal tumours arising rom cancer

Improved nutrition reduces the incidence of spina bifida and other neuraltube defects (21) Voluntary periconceptional oral olate supplementation(three months beore and afer conception) has been shown to reduce the rateo inants being born with neural tube deects including spina bifida (22 23)Many countries that have a policy o supplementation o wheat flour with olicacid have also seen a all in the incidence o spina bifida (24ndash27 )

5 Spinal cord injury is survivable

Appropriate pre-hospital care is vital for immediate survival Quick rec-ognition early evaluation and appropriate management o suspected SCIare required Pre-hospital management in traumatic SCI requires a rapid

evaluation including measurement o vital signs and level o consciousnessinitiation o injury management including stabilization o vital unctionsimmobilization o the spine to preserve neurological unction until long-termspinal stability can be established and control o bleeding body tempera-ture and pain and prompt and sae access to the health-care system Peopleshould ideally arrive in an acute care setting within two hours which relieson adequate emergency and rescue services

Acute care ensures stabilization Acute care may involve surgical interventionor conservative management but accurate diagnosis o SCI and co-occurringconditions is the vital first step Many actors should be taken into consid-eration to determine the most appropriate management approach including

level o injury type o racture degree o instability presence o neural com-pression impact o other injuries surgical timing availability o resourcessuch as expertise and appropriate medical and surgical acilities and benefitsand risks In all cases people with SCI and their amily members should begiven an inormed choice between conservative and surgical management

Ongoing health care maintenance is required for survival and good qualityof life Te individual can avoid or survive the complications o SCI such asurinary tract inections and pressure ulcers remain healthy and enjoy a longand ull lie with access to ongoing health care People with SCI ofen have

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viii

International Perspectives on Spinal Cord Injury

a narrower margin o health or example a raised risk o chest inectionsand cardiovascular disease Without access to basic health care together withproducts such as catheters and appropriate cushions ollowed up by advice onhealthy living a person with SCI is more likely to die prematurely

6 Spinal cord injury need not prevent good health and socialinclusion

A person with SCI who has access to health care personal assistance i requiredand assistive devices should be able to return to study live independently makean economic contribution and participate in amily and community lie Once stabilized there is a need for access to relevant acute and post-acute

medical care and rehabilitation services to ensure that unctioning is maxi-mized and that the individual can become as independent as possible Tereare different models o service delivery but specialist centres have been shownto reduce costs result in ewer complications and result in ewer rehospi-talizations compared to nonspecialized services People with SCI give highpriority to achieving control o bladder and bowel unctions Terapy canenhance unction in lower and upper limbs and teach techniques or achiev-ing independence in everyday activities Mental health services and advice areimportant depression is associated with ewer improvements in unctioningand increased rate o health complications Inormation and support withsexual and reproductive health needs should also be part o rehabilitation

Appropriate assistive devices are a vital component of rehabilitation Forexample more than 90 o people with SCI require some orm o wheelchair

Tese must be appropriate or the individual and or the setting Other assis-tive technology needs include modifications in and around the home envi-ronmental control and sometimes communication systems or people withtetraplegia

Services should support return to education and employment Sel-helpgroups accessible buildings and transport vocational rehabilitation and anti-discrimination measures can ensure that children and adults can return tostudy live independently make an economic contribution and participate inamily and community lie

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ix

Summary

Recommendations

1 Improve health sector response to spinal cord injury

Tis requires building capacity o the health and rehabilitation workorce strength-ening prevention and early response services ensuring that appropriate medicalservices and rehabilitation services are available and accessible improving coordi-nation to enhance effectiveness and save costs extending health insurance cover-age so that SCI does not lead to catastrophic health expenditure and identiyingstrategies or the supply o appropriate assistive technology and health products

2 Empower people with spinal cord injury and their families

People with SCI need inormation so that they can take responsibility or theirown health care afer discharge Inormation should be shared with amily mem-bers during rehabilitation Support or amily members and other caregivers canprevent stress and burnout

In high-income countries an independent living model o personal assistancecan be empowering and cost-effective or people with SCI who have high sup-port needs Community-based rehabilitation (CBR) is important in low-incomesettings In all settings social networks sel-help groups and disabled peoplersquosorganizations can promote empowerment and participation Access to physicalactivities and sport can promote both physiological and psychological well-being

3 Challenge negative attitudes to people with spinal cord injury

As part o general disability awareness campaigns this can involve a range ointerventions including undergraduate education or doctors and other healthproessionals classroom activities to reduce stigma and awareness campaignsthrough media

4 Ensure that buildings transport and information areaccessible

Tis requires enorceable national access standards teaching architects anddesigners about universal design improving access to social housing promoting

ldquouniversally designedrdquo bus rapid transport mandating accessibility or privatetaxis and using organizations o persons with disabilities to consult on acces-sibility and monitor progress

5 Support employment and self-employment

Vocational training flexible working supported employment and community-based rehabilitation projects with a ocus on livelihood are all promising optionsor people with SCI returning to work Social protection schemes should be

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x

International Perspectives on Spinal Cord Injury

available depending on the setting and the economic status o the individual butshould not act as a disincentive to return to work

6 Promote appropriate research and data collection

Tere is a pressing need to both increase and improve routine data collectionand research on SCI Disaggregated statistics on SCI using standardized ICECIterminology can assist incident trend analysis and help in monitoring o policyresponses SCI registries which compile data directly rom hospitals togetherwith longitudinal population-based cohort studies covering major lie areas arethe best ways o collecting SCI data At service level data are required on costsoutcomes and costbenefits

7 Implement recommendations

Implementing these recommendations requires the involvement o different sec-tors ndash health education social protection labour transport and housing ndash anddifferent actors ndash governments civil society organizations (including organiza-tions o persons with disabilities) proessionals the private sector and peoplewith SCI and their amilies Sectors and actors need to work together because mul-tidisciplinary teamwork will maximize success It is essential that countries tailortheir actions to their specific contexts Where countries are limited by resourceconstraints some o the priority actions particularly those requiring technicalassistance and capacity-building can be included within the ramework o inter-national cooperation

Conclusion

While the incidence o traumatic and non-traumatic SCI can and should bereduced there will always be new cases o SCI SCI will continue to affect mainlyindividuals in the prime o lie Ensuring an adequate medical and rehabilitationresponse ollowed by supportive services and accessible environments wil l helpminimize the disruption to people with SCI and their amilies Tese measureswill also reduce the overall costs to society in terms o dependency and lost pro-ductivity and to the individual in terms o lower sel-esteem and impaired quality

o lie SCI is preventable survivable and need not preclude good health and socialinclusion But action by governments and other stakeholders is urgently requiredWithout effective action SCI will remain all too ofen a catastrophe

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xi

Summary

References1 United Nations Department of Economic and Social Affairs Population Division World population

prospec ts the 2012 revision DVD Edition 2013

2 Dahlberg A et al Prevalence of spinal cord injury in Helsinki Spinal Cord 2005 4347-50 doi

httpdxdoiorg101038sjsc3101616 PMID15520842

3 OrsquoConnor PJ Prevalence of spinal cord injury in Australia Spinal Cord 2005 4342-46 doi http

dxdoiorg101038sjsc3101666 PMID15326472

4 Noonan VK et al Incidence and prevalence of spinal cord injury in Canada a national per-

spective Neuroepidemiology 2012 38219-226 doi httpdxdoiorg101159000336014

PMID22555590

5 New PW Farry A Baxter D Noonan VK Prevalence of non-traumatic spinal cord injury in Victoria

Australia Spinal Cord 2013 5199-102 doi httpdxdoiorg101038sc201261 PMID22665222

6 Middleton JW et al Life expectancy after spinal cord injury a 50-year study Spinal Cord 2012

50803-811 doi httpdxdoiorg101038sc201255 PMID22584284

7 Gosselin RA Coppotelli C A follow-up study of patients with spinal cord injury in Sierra Leone

International Orthopaedics 2005 29330-332 doi httpdxdoiorg101007s00264-005-

0665-3 PMID16094542

8 Lidal IB et al Mortality after spinal cord injury in Norway Journal of Rehab ilitat ion Medicine 2007

39145-151 doi httpdxdoiorg10234016501977-0017 PMID17351697

9 Rathore MFA Spinal cord injuries in the developing world In JH Stone M Blouin eds

International Encyclopedia of Rehabilitation 2013 Available online httpcirriebuffaloedu

encyclopediaenarticle141

10 Hagen EM Rekand T Gilhus NE Groslashnning M Traumatic spinal cord injuriesndashincidence mecha-

nisms and course Tidsskrift for Den Norske Laegeforening 2012 132831-837 doi httpdxdoi

org104045tidsskr100859 PMID22511097

11 Leal-Filho MB et al Spinal cord injury epidemiological study of 386 cases with emphasis on

those patients admitted more than four hours after the trauma Arquivos de Neuro-Ps iquiatria

2008 66 2B365-368 doi httpdxdoiorg101590S0004-282X2008000300016 PMID18641873

12 Post MWM van Leeuwen CMC Psychosocial issues in spinal cord injury a review Spinal Cord

2012 50382-389 doi httpdxdoiorg101038sc2011182 PMID22270190

13 Young AE Murphy GC Employment status after spinal cord injury (1992ndash2005) a review with impli-

cations for interpretation evaluation further research and clinical practice International Journal of

Rehabilitation 2009 321-11 doi httpdxdoiorg101097MRR0b013e32831c8b19 PMID19057392

14 Access Economics for the Victorian Neurotrauma Initiative The economic cost of spinal cord

injury and traumatic brain injury in Australia 2009 (httpwwwtacvicgovauabout-the-tac

our-organisationresearchtac-neurotrauma-researchvnithe20economic20cost20of20spinal-

20cord20injury20and20traumatic20brain20injury20in20australiapdf accessed 9 January 2013)

15 WHO Guidelines on the provision of manual wheelchairs in less-resourced settings Geneva World

Health Organization 2008

16 Post MWM van Asbeck FW van Dijk AJ Schrijvers AJ Services for spinal cord injured availability and

satisfaction Spinal Cord 1997 35109-115 doi httpdxdoiorg101038sjsc3100362 PMID9044519

17 Kawu AA et al A cost analysis of conservative management of spinal cord-injured patients in

Nigeria Spinal Cord 2011 491134-1137 doi httpdxdoiorg101038sc201169 PMID2169127818 Peden M et al eds World report on road traffic injury prevention Geneva World Health

Organization 2004

19 OrsquoConnor P Trends in spinal cord injury Accident Analysis and Prevention 2006 3871ndash77 doi

httpdxdoiorg101016jaap200503025 PMID16111641

20 Harries AD et al The HIV-associated tuberculosis epidemicndashwhen will we act Lancet 2010

3751906-1919 doi httpdxdoiorg101016S0140-6736(10)60409-6 PMID20488516

21 Yi Y Lindemann M Colligs A Snowball C Economic burden of neural tube defects and impact of

prevention with folic acid a literature review European Journal of Pediatrics 2011 1701391-1400

doi httpdxdoiorg101007s00431-011-1492-8 PMID21594574

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xii

International Perspectives on Spinal Cord Injury

22 Toriello HV Policy and Practice Guideline Committee of the American College of Medical

Genetics Policy statement on folic acid and neural tube defects Genetics in Medicine 2011

13593-596 doi httpdxdoiorg101097GIM0b013e31821d4188 PMID21552133

23 De-Regil LM Fernaacutendez-Gaxiola AC Dowswell T Pentildea-Rosas JP Effects and safety of pericon-

ceptional folate supplementation for preventing birth defects Cochrane Database of Systematic

Reviews 2010 6CD007950 PMID2092776724 Flour Fortification Initiative FFI Database Atlanta 2012 (httpwwwsphemoryeduwheatflour

globalmapphp accessed 28 May 2012)

25 Williams LJ et al Decline in the prevalence of spina bifida and anencephaly by raceethnicity 1995ndash

2002 Pediatrics 2005 116580-586 doi httpdxdoiorg101542peds2005-0592 PMID16140696

26 Berry RJ Bailey L Mulinare J Bower C Folic Acid Working Group Fortification of flour with folic

acid Food and Nutrition Bulletin 2010 31 SupplS22-S35 PMID20629350

27 Alasfoor D Elsayed MK Mohammed AJ Spina bifida and birth outcome before and after

fortification of flour with iron and folic acid in Oman Eastern Mediterranean Health Journal 2010

16533-538 PMID20799554

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WHONMHVIP1303

ldquoSpinal cord injury need not be a death sentence But this requires effective

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 to

improved understanding and therefore better practicerdquo

SHUAIB CHALKEN UN SPECIAL RAPPORTEUR ON DISABILITY

ldquoSpina bifida is no obstacle to a full and useful life Irsquove been a Paralympic championa wife a mother a broadcaster and a member of the upper house of the British

Parliament Itrsquos taken grit and dedication but Irsquom 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

benefits I hope that policy-makers everywhere will read this report understand

how to tackle the challenge of spinal cord injury and take the necessary actionsrdquo

TANNI GREY983085THOMPSON PARALYMPIC MEDALLIST AND ME MBER OF UK HOUSE O F LORDS

ldquoDisability 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

lsquogenerouslyrsquo gives what he does not need while solidarity is given between equals

in a horizontal way among human beings who are different but equal in their

rights We need to eliminate the barriers construct a way to liberty the liberty of

being different This is true inclusionrdquo

LENIacuteN MORENO FORMER VICE983085PRESIDENT OF THE REPUBLIC OF ECUADOR

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iii

Spinal cord injury (SCI) is a medically complex and lie-disrupting conditionSCI reers to damage to the spinal cord arising rom trauma ndash such as carcrash ndash or rom non-traumatic disease or degeneration ndash such as tuberculosis(B) SCI encompasses the baby born with spina biida and the constructionworker who alls rom scaolding It includes the victim o conlict or gun

violence and the older person who develops SCI as a result o osteoporosisor a tumour

SCI has costly consequences both or individuals and society People arelet dependent are excluded rom school and are less likely to be employedWorst o all they risk premature death SCI is both a public health and humanrights chal lenge With the right policy responses it is possible to live thriveand contribute with SCI anywhere in the world People with SCI are peoplewith disabilities and they are entitled to the same human rights and respectas all other people with disabilities Once a person with SCI has had their

immediate health needs met social and environmental barriers are the mainobstacles to successul unctioning and inclusion in society It is essential toensure that health services education transport and employment are avail-able and accessible to people with SCI alongside other people with disabi litiesSCI wil l always be l ie-changing but it need not be a tragedy and it need notbe a burden

he aims o International Perspectives on Spinal Cord Injury are to assemble and summarize inormation on SCI in particular the epidemiol-

ogy services interventions and policies that are relevant together with thelived experience o people with SCI across the lie course and throughoutthe world

make recommendations or actions based on this evidence that are consist-ent with the aspirations or inclusion and participation as expressed in theConvention on the Rights of Persons with Disabilities

Summary

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iv

International Perspectives on Spinal Cord Injury

Key findings

1 Spinal cord injury is a significant public health issue

Te global incidence of SCI both traumatic and non-traumatic is likely tobe between 40 and 80 cases per million population Based on the 2012 worldpopulation estimates this means that every year between 250 000 and 500 000people suffer a spinal cord injury (1) Te incidence o traumatic SCI (SCI)reported in country-level studies ranges rom 13 per million to 53 per millionHistorically up to 90 o SCI has been traumatic in origin but data rom themost recent studies indicate a slight trend towards an increase in the share onon-traumatic SCI (NSCI) Available studies report an incidence o NSCIo 26 per million

No global estimates of SCI prevalence are available Data on SCI incidenceand prevalence are inadequate and inconsistent Even in developed countriesfigures vary due to differences in case ascertainment and modelling method-ology as well as to real differences in epidemiology SCI prevalence figuresrange rom 280 per million population in Finland (2) to 681 per million inAustralia (3) to 1298 per million in Canada (4) NSCI prevalence or adultsand children in Australia is 367 per million (5) and in Canada 1227 per mil-lion (4) Overall combined SCI and NSCI prevalence or Canada in 2010was 2525 per million population

Increasing prevalence of SCI in some countries Tere is a trend towardsincreasing prevalence o SCI in high-income countries due to increases in sur-

vival rates which have reached approximately 70 o general population lie

expectancy or tetraplegics and 88 or people with complete paraplegia (6 )However survival rates in low- and middle-income countries remain poor ndashas low as one to two years afer injury in some settings minus and this contributesto lower prevalence (7 ) Global ageing is likely to increase rates o NSCI andthere is a slight trend or NSCI to increase as a proportion o total SCI

Changing profile of victims Te SCI incidence rate peaks in young adulthoodand to a lesser extent in old age While young males dominate the statisticsthe profile is changing to include more older people and more women Over-all age at time o injury is increasing

Road traffic crashes falls and violence are the main three causes of SCI Road traffic injuries predominate in the Arican Region accounting or nearly

70 o cases and are a prominent underlying cause o SCI in other WHOregions as well ranging between 40 in the South-East Asia Region and 55in the Western Pacific Region Falls the second leading cause account or

just over 40 o all cases in the South-East Asia and Eastern MediterraneanRegions Te Arican Region reports the lowest percentage (14) o alls withthe other WHO regions showing percentages between 27 and 36 Rates oassault including violence and sel-harm mostly rom firearms as a causeo SCI vary considerably across regions the Americas Arican and EasternMediterranean Regions reporting the highest percentages o 14 12 and

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v

Summary

11 respectively Work-related accidents contribute to at least 15 o all SCIcases Across all regions sport and leisure activities contribute less than 10o all cases o SCI Attempted suicide has been shown to contribute to over10 o SCI cases in some countries uberculosis may account or up to 20o all NSCI cases in some contexts

People with SCI die earlier Studies have indicated that people with SCI are2 to 5 times more likely to die prematurely than people without SCI Peoplewith tetraplegia are at higher risk than people with paraplegia and peoplewith complete lesions are at higher risk than people with incomplete lesionsMortality is particularly high in the first year afer injury (8) and mortalityrates are strongly affected by the capacity o the health-care system especiallyemergency care Studies on in-hospital average mortality rates in low-incomecountries are at least three times as high as those in the high-resource settings

In low-income countries preventable secondary conditions remain themain causes of death for people with SCI (9) In high-income countries themain causes o death or people with SCI have changed over recent decades(10 11) with urological complications in decline and the leading cause odeath shifing to respiratory problems pneumonia or influenza in particularHeart disease suicide and neurological problems are other associated causeso death

2 Personal and social impacts of spinal cord injury areconsiderable

SCI has a debilitating psychological impact 20ndash30 o people with SCI show

clinically significant symptoms o depression which is substantially higherthan the general population (12) although the majority o people eventuallyadapt well to SCI

People with SCI have a narrower margin of health due partly to preventablecomplications such as urinary tract inections and pressure sores

SCI is associated with family breakdown but also family resilience Imme-diately afer injury SCI can have a negative impact on personal relationshipsand is associated with a higher rate o divorce However post-SCI relation-ships generally do better Carers o children and young people with spinabifida or traumatic SCI typically experience isolation and stress

Lower participation in school Children and young people with spina bifida

or acquired SCI are less likely to attend school and less likely to participate intertiary education Tey ace obstacles in the transition between school andtertiary education and between education and employment

SCI is associated with lower rates of economic participation Average globalemployment rates or people with SCI are only 37 with a high o 51 inEurope (13)

Costs of SCI are higher than for comparable conditions such as dementiamultiple sclerosis cerebral palsy and bipolar disorder In Australia the lie-time costs (including the financial costs and burden-o-disease costs) were

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vi

International Perspectives on Spinal Cord Injury

estimated to be AUS$5 million or a person with paraplegia and AUS$95 mil-lion or a person with tetraplegia (14) Indirect costs such as lost earningsgenerally exceed direct costs

3 Barriers to services and environments restrict participationand undermine quality of life

Inadequate policy and provision Ofen appropriate policies and servicesare lacking in areas such as inclusive education accessible environments andrehabilitation For example in low- and middle- income countries only 5minus15o people have the assistive devices that they need (15) In a Netherlands studymore than hal o respondents with SCI were delayed leaving in-patient reha-bilitation due to delays in obtaining wheelchairs (16 )

Lack of funding One Nigerian study or instance showed that or more than40 o respondents with SCI acute treatment costs represented over 50 otheir annual income (17 ) Similarly cost is one o the main barriers when itcomes to assistive devices

Physical access barriers Homes schools workplaces and even hospitals areofen inaccessible to people who use wheelchairs Inaccessibility o transportis a major obstacle to participating in society particularly or those who livein rural areas Tis prevents people with SCI leaving hospital or nursing homeand becoming independent

Negative attitudes It may be alsely perceived or example that tetraplegia isa ate worse than death or that people in wheelchairs cannot work or cannothave intimate relations Even amily members may have negative attitudes and

low expectations Ofen prejudice arises rom lack o knowledge and lack ocontact Lack of knowledge Rehabilitation providers may lack knowledge and skills

relevant to SCI For example lack o expertise among service providers canhinder people with SCI receiving appropriate assistive technologies Primarycare staff may not know about preventable complications in SCI and diag-nostic overshadowing can mean that people with SCI do not receive screeningor treatment or their general health needs More evidence is needed on whatworks both in prevention and management o SCI

4 Spinal cord injury is preventable

Death and disability associated with road traffic crashes can be reduced through the sae systems approach which highlights what can be done toimprove road environments vehicle saety and driver behaviour (18) Forexample the worldrsquos first compulsory seat-belt laws were introduced in Aus-tralia in 1970 and in conjunction with government efforts to improve roaddesign and regulations on car saety there was a 4 pa drop in the annualincidence o SCI rom road traffic crashes (19)

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vii

Summary

Workplace codes on health and safety can reduce injuries caused in miningconstruction and agriculture

Limiting access to guns and knives prevents injuries and reduces cost to soci-ety Measures or limiting access include bans licensing schemes a mini-mum age or buyers background checks and sae storage requirements Tesemeasures have been successully implemented in Austria Brazil and somestates in the USA

Injuries from sporting and leisure activities can be minimized through betterdesign (eg o swimming pools play equipment and ski runs) saety inorma-tion (eg dangers o diving into shallow water training o rugby coaches) andsports-wide awareness

Early detection and treatment can reduce the prevalence of spinal B (20)as well as spinal tumours arising rom cancer

Improved nutrition reduces the incidence of spina bifida and other neuraltube defects (21) Voluntary periconceptional oral olate supplementation(three months beore and afer conception) has been shown to reduce the rateo inants being born with neural tube deects including spina bifida (22 23)Many countries that have a policy o supplementation o wheat flour with olicacid have also seen a all in the incidence o spina bifida (24ndash27 )

5 Spinal cord injury is survivable

Appropriate pre-hospital care is vital for immediate survival Quick rec-ognition early evaluation and appropriate management o suspected SCIare required Pre-hospital management in traumatic SCI requires a rapid

evaluation including measurement o vital signs and level o consciousnessinitiation o injury management including stabilization o vital unctionsimmobilization o the spine to preserve neurological unction until long-termspinal stability can be established and control o bleeding body tempera-ture and pain and prompt and sae access to the health-care system Peopleshould ideally arrive in an acute care setting within two hours which relieson adequate emergency and rescue services

Acute care ensures stabilization Acute care may involve surgical interventionor conservative management but accurate diagnosis o SCI and co-occurringconditions is the vital first step Many actors should be taken into consid-eration to determine the most appropriate management approach including

level o injury type o racture degree o instability presence o neural com-pression impact o other injuries surgical timing availability o resourcessuch as expertise and appropriate medical and surgical acilities and benefitsand risks In all cases people with SCI and their amily members should begiven an inormed choice between conservative and surgical management

Ongoing health care maintenance is required for survival and good qualityof life Te individual can avoid or survive the complications o SCI such asurinary tract inections and pressure ulcers remain healthy and enjoy a longand ull lie with access to ongoing health care People with SCI ofen have

8172019 Who Nmh Vip 1303 Eng 2

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viii

International Perspectives on Spinal Cord Injury

a narrower margin o health or example a raised risk o chest inectionsand cardiovascular disease Without access to basic health care together withproducts such as catheters and appropriate cushions ollowed up by advice onhealthy living a person with SCI is more likely to die prematurely

6 Spinal cord injury need not prevent good health and socialinclusion

A person with SCI who has access to health care personal assistance i requiredand assistive devices should be able to return to study live independently makean economic contribution and participate in amily and community lie Once stabilized there is a need for access to relevant acute and post-acute

medical care and rehabilitation services to ensure that unctioning is maxi-mized and that the individual can become as independent as possible Tereare different models o service delivery but specialist centres have been shownto reduce costs result in ewer complications and result in ewer rehospi-talizations compared to nonspecialized services People with SCI give highpriority to achieving control o bladder and bowel unctions Terapy canenhance unction in lower and upper limbs and teach techniques or achiev-ing independence in everyday activities Mental health services and advice areimportant depression is associated with ewer improvements in unctioningand increased rate o health complications Inormation and support withsexual and reproductive health needs should also be part o rehabilitation

Appropriate assistive devices are a vital component of rehabilitation Forexample more than 90 o people with SCI require some orm o wheelchair

Tese must be appropriate or the individual and or the setting Other assis-tive technology needs include modifications in and around the home envi-ronmental control and sometimes communication systems or people withtetraplegia

Services should support return to education and employment Sel-helpgroups accessible buildings and transport vocational rehabilitation and anti-discrimination measures can ensure that children and adults can return tostudy live independently make an economic contribution and participate inamily and community lie

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ix

Summary

Recommendations

1 Improve health sector response to spinal cord injury

Tis requires building capacity o the health and rehabilitation workorce strength-ening prevention and early response services ensuring that appropriate medicalservices and rehabilitation services are available and accessible improving coordi-nation to enhance effectiveness and save costs extending health insurance cover-age so that SCI does not lead to catastrophic health expenditure and identiyingstrategies or the supply o appropriate assistive technology and health products

2 Empower people with spinal cord injury and their families

People with SCI need inormation so that they can take responsibility or theirown health care afer discharge Inormation should be shared with amily mem-bers during rehabilitation Support or amily members and other caregivers canprevent stress and burnout

In high-income countries an independent living model o personal assistancecan be empowering and cost-effective or people with SCI who have high sup-port needs Community-based rehabilitation (CBR) is important in low-incomesettings In all settings social networks sel-help groups and disabled peoplersquosorganizations can promote empowerment and participation Access to physicalactivities and sport can promote both physiological and psychological well-being

3 Challenge negative attitudes to people with spinal cord injury

As part o general disability awareness campaigns this can involve a range ointerventions including undergraduate education or doctors and other healthproessionals classroom activities to reduce stigma and awareness campaignsthrough media

4 Ensure that buildings transport and information areaccessible

Tis requires enorceable national access standards teaching architects anddesigners about universal design improving access to social housing promoting

ldquouniversally designedrdquo bus rapid transport mandating accessibility or privatetaxis and using organizations o persons with disabilities to consult on acces-sibility and monitor progress

5 Support employment and self-employment

Vocational training flexible working supported employment and community-based rehabilitation projects with a ocus on livelihood are all promising optionsor people with SCI returning to work Social protection schemes should be

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x

International Perspectives on Spinal Cord Injury

available depending on the setting and the economic status o the individual butshould not act as a disincentive to return to work

6 Promote appropriate research and data collection

Tere is a pressing need to both increase and improve routine data collectionand research on SCI Disaggregated statistics on SCI using standardized ICECIterminology can assist incident trend analysis and help in monitoring o policyresponses SCI registries which compile data directly rom hospitals togetherwith longitudinal population-based cohort studies covering major lie areas arethe best ways o collecting SCI data At service level data are required on costsoutcomes and costbenefits

7 Implement recommendations

Implementing these recommendations requires the involvement o different sec-tors ndash health education social protection labour transport and housing ndash anddifferent actors ndash governments civil society organizations (including organiza-tions o persons with disabilities) proessionals the private sector and peoplewith SCI and their amilies Sectors and actors need to work together because mul-tidisciplinary teamwork will maximize success It is essential that countries tailortheir actions to their specific contexts Where countries are limited by resourceconstraints some o the priority actions particularly those requiring technicalassistance and capacity-building can be included within the ramework o inter-national cooperation

Conclusion

While the incidence o traumatic and non-traumatic SCI can and should bereduced there will always be new cases o SCI SCI will continue to affect mainlyindividuals in the prime o lie Ensuring an adequate medical and rehabilitationresponse ollowed by supportive services and accessible environments wil l helpminimize the disruption to people with SCI and their amilies Tese measureswill also reduce the overall costs to society in terms o dependency and lost pro-ductivity and to the individual in terms o lower sel-esteem and impaired quality

o lie SCI is preventable survivable and need not preclude good health and socialinclusion But action by governments and other stakeholders is urgently requiredWithout effective action SCI will remain all too ofen a catastrophe

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xi

Summary

References1 United Nations Department of Economic and Social Affairs Population Division World population

prospec ts the 2012 revision DVD Edition 2013

2 Dahlberg A et al Prevalence of spinal cord injury in Helsinki Spinal Cord 2005 4347-50 doi

httpdxdoiorg101038sjsc3101616 PMID15520842

3 OrsquoConnor PJ Prevalence of spinal cord injury in Australia Spinal Cord 2005 4342-46 doi http

dxdoiorg101038sjsc3101666 PMID15326472

4 Noonan VK et al Incidence and prevalence of spinal cord injury in Canada a national per-

spective Neuroepidemiology 2012 38219-226 doi httpdxdoiorg101159000336014

PMID22555590

5 New PW Farry A Baxter D Noonan VK Prevalence of non-traumatic spinal cord injury in Victoria

Australia Spinal Cord 2013 5199-102 doi httpdxdoiorg101038sc201261 PMID22665222

6 Middleton JW et al Life expectancy after spinal cord injury a 50-year study Spinal Cord 2012

50803-811 doi httpdxdoiorg101038sc201255 PMID22584284

7 Gosselin RA Coppotelli C A follow-up study of patients with spinal cord injury in Sierra Leone

International Orthopaedics 2005 29330-332 doi httpdxdoiorg101007s00264-005-

0665-3 PMID16094542

8 Lidal IB et al Mortality after spinal cord injury in Norway Journal of Rehab ilitat ion Medicine 2007

39145-151 doi httpdxdoiorg10234016501977-0017 PMID17351697

9 Rathore MFA Spinal cord injuries in the developing world In JH Stone M Blouin eds

International Encyclopedia of Rehabilitation 2013 Available online httpcirriebuffaloedu

encyclopediaenarticle141

10 Hagen EM Rekand T Gilhus NE Groslashnning M Traumatic spinal cord injuriesndashincidence mecha-

nisms and course Tidsskrift for Den Norske Laegeforening 2012 132831-837 doi httpdxdoi

org104045tidsskr100859 PMID22511097

11 Leal-Filho MB et al Spinal cord injury epidemiological study of 386 cases with emphasis on

those patients admitted more than four hours after the trauma Arquivos de Neuro-Ps iquiatria

2008 66 2B365-368 doi httpdxdoiorg101590S0004-282X2008000300016 PMID18641873

12 Post MWM van Leeuwen CMC Psychosocial issues in spinal cord injury a review Spinal Cord

2012 50382-389 doi httpdxdoiorg101038sc2011182 PMID22270190

13 Young AE Murphy GC Employment status after spinal cord injury (1992ndash2005) a review with impli-

cations for interpretation evaluation further research and clinical practice International Journal of

Rehabilitation 2009 321-11 doi httpdxdoiorg101097MRR0b013e32831c8b19 PMID19057392

14 Access Economics for the Victorian Neurotrauma Initiative The economic cost of spinal cord

injury and traumatic brain injury in Australia 2009 (httpwwwtacvicgovauabout-the-tac

our-organisationresearchtac-neurotrauma-researchvnithe20economic20cost20of20spinal-

20cord20injury20and20traumatic20brain20injury20in20australiapdf accessed 9 January 2013)

15 WHO Guidelines on the provision of manual wheelchairs in less-resourced settings Geneva World

Health Organization 2008

16 Post MWM van Asbeck FW van Dijk AJ Schrijvers AJ Services for spinal cord injured availability and

satisfaction Spinal Cord 1997 35109-115 doi httpdxdoiorg101038sjsc3100362 PMID9044519

17 Kawu AA et al A cost analysis of conservative management of spinal cord-injured patients in

Nigeria Spinal Cord 2011 491134-1137 doi httpdxdoiorg101038sc201169 PMID2169127818 Peden M et al eds World report on road traffic injury prevention Geneva World Health

Organization 2004

19 OrsquoConnor P Trends in spinal cord injury Accident Analysis and Prevention 2006 3871ndash77 doi

httpdxdoiorg101016jaap200503025 PMID16111641

20 Harries AD et al The HIV-associated tuberculosis epidemicndashwhen will we act Lancet 2010

3751906-1919 doi httpdxdoiorg101016S0140-6736(10)60409-6 PMID20488516

21 Yi Y Lindemann M Colligs A Snowball C Economic burden of neural tube defects and impact of

prevention with folic acid a literature review European Journal of Pediatrics 2011 1701391-1400

doi httpdxdoiorg101007s00431-011-1492-8 PMID21594574

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xii

International Perspectives on Spinal Cord Injury

22 Toriello HV Policy and Practice Guideline Committee of the American College of Medical

Genetics Policy statement on folic acid and neural tube defects Genetics in Medicine 2011

13593-596 doi httpdxdoiorg101097GIM0b013e31821d4188 PMID21552133

23 De-Regil LM Fernaacutendez-Gaxiola AC Dowswell T Pentildea-Rosas JP Effects and safety of pericon-

ceptional folate supplementation for preventing birth defects Cochrane Database of Systematic

Reviews 2010 6CD007950 PMID2092776724 Flour Fortification Initiative FFI Database Atlanta 2012 (httpwwwsphemoryeduwheatflour

globalmapphp accessed 28 May 2012)

25 Williams LJ et al Decline in the prevalence of spina bifida and anencephaly by raceethnicity 1995ndash

2002 Pediatrics 2005 116580-586 doi httpdxdoiorg101542peds2005-0592 PMID16140696

26 Berry RJ Bailey L Mulinare J Bower C Folic Acid Working Group Fortification of flour with folic

acid Food and Nutrition Bulletin 2010 31 SupplS22-S35 PMID20629350

27 Alasfoor D Elsayed MK Mohammed AJ Spina bifida and birth outcome before and after

fortification of flour with iron and folic acid in Oman Eastern Mediterranean Health Journal 2010

16533-538 PMID20799554

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WHONMHVIP1303

ldquoSpinal cord injury need not be a death sentence But this requires effective

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 to

improved understanding and therefore better practicerdquo

SHUAIB CHALKEN UN SPECIAL RAPPORTEUR ON DISABILITY

ldquoSpina bifida is no obstacle to a full and useful life Irsquove been a Paralympic championa wife a mother a broadcaster and a member of the upper house of the British

Parliament Itrsquos taken grit and dedication but Irsquom 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

benefits I hope that policy-makers everywhere will read this report understand

how to tackle the challenge of spinal cord injury and take the necessary actionsrdquo

TANNI GREY983085THOMPSON PARALYMPIC MEDALLIST AND ME MBER OF UK HOUSE O F LORDS

ldquoDisability 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

lsquogenerouslyrsquo gives what he does not need while solidarity is given between equals

in a horizontal way among human beings who are different but equal in their

rights We need to eliminate the barriers construct a way to liberty the liberty of

being different This is true inclusionrdquo

LENIacuteN MORENO FORMER VICE983085PRESIDENT OF THE REPUBLIC OF ECUADOR

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iv

International Perspectives on Spinal Cord Injury

Key findings

1 Spinal cord injury is a significant public health issue

Te global incidence of SCI both traumatic and non-traumatic is likely tobe between 40 and 80 cases per million population Based on the 2012 worldpopulation estimates this means that every year between 250 000 and 500 000people suffer a spinal cord injury (1) Te incidence o traumatic SCI (SCI)reported in country-level studies ranges rom 13 per million to 53 per millionHistorically up to 90 o SCI has been traumatic in origin but data rom themost recent studies indicate a slight trend towards an increase in the share onon-traumatic SCI (NSCI) Available studies report an incidence o NSCIo 26 per million

No global estimates of SCI prevalence are available Data on SCI incidenceand prevalence are inadequate and inconsistent Even in developed countriesfigures vary due to differences in case ascertainment and modelling method-ology as well as to real differences in epidemiology SCI prevalence figuresrange rom 280 per million population in Finland (2) to 681 per million inAustralia (3) to 1298 per million in Canada (4) NSCI prevalence or adultsand children in Australia is 367 per million (5) and in Canada 1227 per mil-lion (4) Overall combined SCI and NSCI prevalence or Canada in 2010was 2525 per million population

Increasing prevalence of SCI in some countries Tere is a trend towardsincreasing prevalence o SCI in high-income countries due to increases in sur-

vival rates which have reached approximately 70 o general population lie

expectancy or tetraplegics and 88 or people with complete paraplegia (6 )However survival rates in low- and middle-income countries remain poor ndashas low as one to two years afer injury in some settings minus and this contributesto lower prevalence (7 ) Global ageing is likely to increase rates o NSCI andthere is a slight trend or NSCI to increase as a proportion o total SCI

Changing profile of victims Te SCI incidence rate peaks in young adulthoodand to a lesser extent in old age While young males dominate the statisticsthe profile is changing to include more older people and more women Over-all age at time o injury is increasing

Road traffic crashes falls and violence are the main three causes of SCI Road traffic injuries predominate in the Arican Region accounting or nearly

70 o cases and are a prominent underlying cause o SCI in other WHOregions as well ranging between 40 in the South-East Asia Region and 55in the Western Pacific Region Falls the second leading cause account or

just over 40 o all cases in the South-East Asia and Eastern MediterraneanRegions Te Arican Region reports the lowest percentage (14) o alls withthe other WHO regions showing percentages between 27 and 36 Rates oassault including violence and sel-harm mostly rom firearms as a causeo SCI vary considerably across regions the Americas Arican and EasternMediterranean Regions reporting the highest percentages o 14 12 and

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v

Summary

11 respectively Work-related accidents contribute to at least 15 o all SCIcases Across all regions sport and leisure activities contribute less than 10o all cases o SCI Attempted suicide has been shown to contribute to over10 o SCI cases in some countries uberculosis may account or up to 20o all NSCI cases in some contexts

People with SCI die earlier Studies have indicated that people with SCI are2 to 5 times more likely to die prematurely than people without SCI Peoplewith tetraplegia are at higher risk than people with paraplegia and peoplewith complete lesions are at higher risk than people with incomplete lesionsMortality is particularly high in the first year afer injury (8) and mortalityrates are strongly affected by the capacity o the health-care system especiallyemergency care Studies on in-hospital average mortality rates in low-incomecountries are at least three times as high as those in the high-resource settings

In low-income countries preventable secondary conditions remain themain causes of death for people with SCI (9) In high-income countries themain causes o death or people with SCI have changed over recent decades(10 11) with urological complications in decline and the leading cause odeath shifing to respiratory problems pneumonia or influenza in particularHeart disease suicide and neurological problems are other associated causeso death

2 Personal and social impacts of spinal cord injury areconsiderable

SCI has a debilitating psychological impact 20ndash30 o people with SCI show

clinically significant symptoms o depression which is substantially higherthan the general population (12) although the majority o people eventuallyadapt well to SCI

People with SCI have a narrower margin of health due partly to preventablecomplications such as urinary tract inections and pressure sores

SCI is associated with family breakdown but also family resilience Imme-diately afer injury SCI can have a negative impact on personal relationshipsand is associated with a higher rate o divorce However post-SCI relation-ships generally do better Carers o children and young people with spinabifida or traumatic SCI typically experience isolation and stress

Lower participation in school Children and young people with spina bifida

or acquired SCI are less likely to attend school and less likely to participate intertiary education Tey ace obstacles in the transition between school andtertiary education and between education and employment

SCI is associated with lower rates of economic participation Average globalemployment rates or people with SCI are only 37 with a high o 51 inEurope (13)

Costs of SCI are higher than for comparable conditions such as dementiamultiple sclerosis cerebral palsy and bipolar disorder In Australia the lie-time costs (including the financial costs and burden-o-disease costs) were

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vi

International Perspectives on Spinal Cord Injury

estimated to be AUS$5 million or a person with paraplegia and AUS$95 mil-lion or a person with tetraplegia (14) Indirect costs such as lost earningsgenerally exceed direct costs

3 Barriers to services and environments restrict participationand undermine quality of life

Inadequate policy and provision Ofen appropriate policies and servicesare lacking in areas such as inclusive education accessible environments andrehabilitation For example in low- and middle- income countries only 5minus15o people have the assistive devices that they need (15) In a Netherlands studymore than hal o respondents with SCI were delayed leaving in-patient reha-bilitation due to delays in obtaining wheelchairs (16 )

Lack of funding One Nigerian study or instance showed that or more than40 o respondents with SCI acute treatment costs represented over 50 otheir annual income (17 ) Similarly cost is one o the main barriers when itcomes to assistive devices

Physical access barriers Homes schools workplaces and even hospitals areofen inaccessible to people who use wheelchairs Inaccessibility o transportis a major obstacle to participating in society particularly or those who livein rural areas Tis prevents people with SCI leaving hospital or nursing homeand becoming independent

Negative attitudes It may be alsely perceived or example that tetraplegia isa ate worse than death or that people in wheelchairs cannot work or cannothave intimate relations Even amily members may have negative attitudes and

low expectations Ofen prejudice arises rom lack o knowledge and lack ocontact Lack of knowledge Rehabilitation providers may lack knowledge and skills

relevant to SCI For example lack o expertise among service providers canhinder people with SCI receiving appropriate assistive technologies Primarycare staff may not know about preventable complications in SCI and diag-nostic overshadowing can mean that people with SCI do not receive screeningor treatment or their general health needs More evidence is needed on whatworks both in prevention and management o SCI

4 Spinal cord injury is preventable

Death and disability associated with road traffic crashes can be reduced through the sae systems approach which highlights what can be done toimprove road environments vehicle saety and driver behaviour (18) Forexample the worldrsquos first compulsory seat-belt laws were introduced in Aus-tralia in 1970 and in conjunction with government efforts to improve roaddesign and regulations on car saety there was a 4 pa drop in the annualincidence o SCI rom road traffic crashes (19)

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vii

Summary

Workplace codes on health and safety can reduce injuries caused in miningconstruction and agriculture

Limiting access to guns and knives prevents injuries and reduces cost to soci-ety Measures or limiting access include bans licensing schemes a mini-mum age or buyers background checks and sae storage requirements Tesemeasures have been successully implemented in Austria Brazil and somestates in the USA

Injuries from sporting and leisure activities can be minimized through betterdesign (eg o swimming pools play equipment and ski runs) saety inorma-tion (eg dangers o diving into shallow water training o rugby coaches) andsports-wide awareness

Early detection and treatment can reduce the prevalence of spinal B (20)as well as spinal tumours arising rom cancer

Improved nutrition reduces the incidence of spina bifida and other neuraltube defects (21) Voluntary periconceptional oral olate supplementation(three months beore and afer conception) has been shown to reduce the rateo inants being born with neural tube deects including spina bifida (22 23)Many countries that have a policy o supplementation o wheat flour with olicacid have also seen a all in the incidence o spina bifida (24ndash27 )

5 Spinal cord injury is survivable

Appropriate pre-hospital care is vital for immediate survival Quick rec-ognition early evaluation and appropriate management o suspected SCIare required Pre-hospital management in traumatic SCI requires a rapid

evaluation including measurement o vital signs and level o consciousnessinitiation o injury management including stabilization o vital unctionsimmobilization o the spine to preserve neurological unction until long-termspinal stability can be established and control o bleeding body tempera-ture and pain and prompt and sae access to the health-care system Peopleshould ideally arrive in an acute care setting within two hours which relieson adequate emergency and rescue services

Acute care ensures stabilization Acute care may involve surgical interventionor conservative management but accurate diagnosis o SCI and co-occurringconditions is the vital first step Many actors should be taken into consid-eration to determine the most appropriate management approach including

level o injury type o racture degree o instability presence o neural com-pression impact o other injuries surgical timing availability o resourcessuch as expertise and appropriate medical and surgical acilities and benefitsand risks In all cases people with SCI and their amily members should begiven an inormed choice between conservative and surgical management

Ongoing health care maintenance is required for survival and good qualityof life Te individual can avoid or survive the complications o SCI such asurinary tract inections and pressure ulcers remain healthy and enjoy a longand ull lie with access to ongoing health care People with SCI ofen have

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viii

International Perspectives on Spinal Cord Injury

a narrower margin o health or example a raised risk o chest inectionsand cardiovascular disease Without access to basic health care together withproducts such as catheters and appropriate cushions ollowed up by advice onhealthy living a person with SCI is more likely to die prematurely

6 Spinal cord injury need not prevent good health and socialinclusion

A person with SCI who has access to health care personal assistance i requiredand assistive devices should be able to return to study live independently makean economic contribution and participate in amily and community lie Once stabilized there is a need for access to relevant acute and post-acute

medical care and rehabilitation services to ensure that unctioning is maxi-mized and that the individual can become as independent as possible Tereare different models o service delivery but specialist centres have been shownto reduce costs result in ewer complications and result in ewer rehospi-talizations compared to nonspecialized services People with SCI give highpriority to achieving control o bladder and bowel unctions Terapy canenhance unction in lower and upper limbs and teach techniques or achiev-ing independence in everyday activities Mental health services and advice areimportant depression is associated with ewer improvements in unctioningand increased rate o health complications Inormation and support withsexual and reproductive health needs should also be part o rehabilitation

Appropriate assistive devices are a vital component of rehabilitation Forexample more than 90 o people with SCI require some orm o wheelchair

Tese must be appropriate or the individual and or the setting Other assis-tive technology needs include modifications in and around the home envi-ronmental control and sometimes communication systems or people withtetraplegia

Services should support return to education and employment Sel-helpgroups accessible buildings and transport vocational rehabilitation and anti-discrimination measures can ensure that children and adults can return tostudy live independently make an economic contribution and participate inamily and community lie

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ix

Summary

Recommendations

1 Improve health sector response to spinal cord injury

Tis requires building capacity o the health and rehabilitation workorce strength-ening prevention and early response services ensuring that appropriate medicalservices and rehabilitation services are available and accessible improving coordi-nation to enhance effectiveness and save costs extending health insurance cover-age so that SCI does not lead to catastrophic health expenditure and identiyingstrategies or the supply o appropriate assistive technology and health products

2 Empower people with spinal cord injury and their families

People with SCI need inormation so that they can take responsibility or theirown health care afer discharge Inormation should be shared with amily mem-bers during rehabilitation Support or amily members and other caregivers canprevent stress and burnout

In high-income countries an independent living model o personal assistancecan be empowering and cost-effective or people with SCI who have high sup-port needs Community-based rehabilitation (CBR) is important in low-incomesettings In all settings social networks sel-help groups and disabled peoplersquosorganizations can promote empowerment and participation Access to physicalactivities and sport can promote both physiological and psychological well-being

3 Challenge negative attitudes to people with spinal cord injury

As part o general disability awareness campaigns this can involve a range ointerventions including undergraduate education or doctors and other healthproessionals classroom activities to reduce stigma and awareness campaignsthrough media

4 Ensure that buildings transport and information areaccessible

Tis requires enorceable national access standards teaching architects anddesigners about universal design improving access to social housing promoting

ldquouniversally designedrdquo bus rapid transport mandating accessibility or privatetaxis and using organizations o persons with disabilities to consult on acces-sibility and monitor progress

5 Support employment and self-employment

Vocational training flexible working supported employment and community-based rehabilitation projects with a ocus on livelihood are all promising optionsor people with SCI returning to work Social protection schemes should be

8172019 Who Nmh Vip 1303 Eng 2

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x

International Perspectives on Spinal Cord Injury

available depending on the setting and the economic status o the individual butshould not act as a disincentive to return to work

6 Promote appropriate research and data collection

Tere is a pressing need to both increase and improve routine data collectionand research on SCI Disaggregated statistics on SCI using standardized ICECIterminology can assist incident trend analysis and help in monitoring o policyresponses SCI registries which compile data directly rom hospitals togetherwith longitudinal population-based cohort studies covering major lie areas arethe best ways o collecting SCI data At service level data are required on costsoutcomes and costbenefits

7 Implement recommendations

Implementing these recommendations requires the involvement o different sec-tors ndash health education social protection labour transport and housing ndash anddifferent actors ndash governments civil society organizations (including organiza-tions o persons with disabilities) proessionals the private sector and peoplewith SCI and their amilies Sectors and actors need to work together because mul-tidisciplinary teamwork will maximize success It is essential that countries tailortheir actions to their specific contexts Where countries are limited by resourceconstraints some o the priority actions particularly those requiring technicalassistance and capacity-building can be included within the ramework o inter-national cooperation

Conclusion

While the incidence o traumatic and non-traumatic SCI can and should bereduced there will always be new cases o SCI SCI will continue to affect mainlyindividuals in the prime o lie Ensuring an adequate medical and rehabilitationresponse ollowed by supportive services and accessible environments wil l helpminimize the disruption to people with SCI and their amilies Tese measureswill also reduce the overall costs to society in terms o dependency and lost pro-ductivity and to the individual in terms o lower sel-esteem and impaired quality

o lie SCI is preventable survivable and need not preclude good health and socialinclusion But action by governments and other stakeholders is urgently requiredWithout effective action SCI will remain all too ofen a catastrophe

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xi

Summary

References1 United Nations Department of Economic and Social Affairs Population Division World population

prospec ts the 2012 revision DVD Edition 2013

2 Dahlberg A et al Prevalence of spinal cord injury in Helsinki Spinal Cord 2005 4347-50 doi

httpdxdoiorg101038sjsc3101616 PMID15520842

3 OrsquoConnor PJ Prevalence of spinal cord injury in Australia Spinal Cord 2005 4342-46 doi http

dxdoiorg101038sjsc3101666 PMID15326472

4 Noonan VK et al Incidence and prevalence of spinal cord injury in Canada a national per-

spective Neuroepidemiology 2012 38219-226 doi httpdxdoiorg101159000336014

PMID22555590

5 New PW Farry A Baxter D Noonan VK Prevalence of non-traumatic spinal cord injury in Victoria

Australia Spinal Cord 2013 5199-102 doi httpdxdoiorg101038sc201261 PMID22665222

6 Middleton JW et al Life expectancy after spinal cord injury a 50-year study Spinal Cord 2012

50803-811 doi httpdxdoiorg101038sc201255 PMID22584284

7 Gosselin RA Coppotelli C A follow-up study of patients with spinal cord injury in Sierra Leone

International Orthopaedics 2005 29330-332 doi httpdxdoiorg101007s00264-005-

0665-3 PMID16094542

8 Lidal IB et al Mortality after spinal cord injury in Norway Journal of Rehab ilitat ion Medicine 2007

39145-151 doi httpdxdoiorg10234016501977-0017 PMID17351697

9 Rathore MFA Spinal cord injuries in the developing world In JH Stone M Blouin eds

International Encyclopedia of Rehabilitation 2013 Available online httpcirriebuffaloedu

encyclopediaenarticle141

10 Hagen EM Rekand T Gilhus NE Groslashnning M Traumatic spinal cord injuriesndashincidence mecha-

nisms and course Tidsskrift for Den Norske Laegeforening 2012 132831-837 doi httpdxdoi

org104045tidsskr100859 PMID22511097

11 Leal-Filho MB et al Spinal cord injury epidemiological study of 386 cases with emphasis on

those patients admitted more than four hours after the trauma Arquivos de Neuro-Ps iquiatria

2008 66 2B365-368 doi httpdxdoiorg101590S0004-282X2008000300016 PMID18641873

12 Post MWM van Leeuwen CMC Psychosocial issues in spinal cord injury a review Spinal Cord

2012 50382-389 doi httpdxdoiorg101038sc2011182 PMID22270190

13 Young AE Murphy GC Employment status after spinal cord injury (1992ndash2005) a review with impli-

cations for interpretation evaluation further research and clinical practice International Journal of

Rehabilitation 2009 321-11 doi httpdxdoiorg101097MRR0b013e32831c8b19 PMID19057392

14 Access Economics for the Victorian Neurotrauma Initiative The economic cost of spinal cord

injury and traumatic brain injury in Australia 2009 (httpwwwtacvicgovauabout-the-tac

our-organisationresearchtac-neurotrauma-researchvnithe20economic20cost20of20spinal-

20cord20injury20and20traumatic20brain20injury20in20australiapdf accessed 9 January 2013)

15 WHO Guidelines on the provision of manual wheelchairs in less-resourced settings Geneva World

Health Organization 2008

16 Post MWM van Asbeck FW van Dijk AJ Schrijvers AJ Services for spinal cord injured availability and

satisfaction Spinal Cord 1997 35109-115 doi httpdxdoiorg101038sjsc3100362 PMID9044519

17 Kawu AA et al A cost analysis of conservative management of spinal cord-injured patients in

Nigeria Spinal Cord 2011 491134-1137 doi httpdxdoiorg101038sc201169 PMID2169127818 Peden M et al eds World report on road traffic injury prevention Geneva World Health

Organization 2004

19 OrsquoConnor P Trends in spinal cord injury Accident Analysis and Prevention 2006 3871ndash77 doi

httpdxdoiorg101016jaap200503025 PMID16111641

20 Harries AD et al The HIV-associated tuberculosis epidemicndashwhen will we act Lancet 2010

3751906-1919 doi httpdxdoiorg101016S0140-6736(10)60409-6 PMID20488516

21 Yi Y Lindemann M Colligs A Snowball C Economic burden of neural tube defects and impact of

prevention with folic acid a literature review European Journal of Pediatrics 2011 1701391-1400

doi httpdxdoiorg101007s00431-011-1492-8 PMID21594574

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1416

xii

International Perspectives on Spinal Cord Injury

22 Toriello HV Policy and Practice Guideline Committee of the American College of Medical

Genetics Policy statement on folic acid and neural tube defects Genetics in Medicine 2011

13593-596 doi httpdxdoiorg101097GIM0b013e31821d4188 PMID21552133

23 De-Regil LM Fernaacutendez-Gaxiola AC Dowswell T Pentildea-Rosas JP Effects and safety of pericon-

ceptional folate supplementation for preventing birth defects Cochrane Database of Systematic

Reviews 2010 6CD007950 PMID2092776724 Flour Fortification Initiative FFI Database Atlanta 2012 (httpwwwsphemoryeduwheatflour

globalmapphp accessed 28 May 2012)

25 Williams LJ et al Decline in the prevalence of spina bifida and anencephaly by raceethnicity 1995ndash

2002 Pediatrics 2005 116580-586 doi httpdxdoiorg101542peds2005-0592 PMID16140696

26 Berry RJ Bailey L Mulinare J Bower C Folic Acid Working Group Fortification of flour with folic

acid Food and Nutrition Bulletin 2010 31 SupplS22-S35 PMID20629350

27 Alasfoor D Elsayed MK Mohammed AJ Spina bifida and birth outcome before and after

fortification of flour with iron and folic acid in Oman Eastern Mediterranean Health Journal 2010

16533-538 PMID20799554

8172019 Who Nmh Vip 1303 Eng 2

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8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1616

WHONMHVIP1303

ldquoSpinal cord injury need not be a death sentence But this requires effective

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 to

improved understanding and therefore better practicerdquo

SHUAIB CHALKEN UN SPECIAL RAPPORTEUR ON DISABILITY

ldquoSpina bifida is no obstacle to a full and useful life Irsquove been a Paralympic championa wife a mother a broadcaster and a member of the upper house of the British

Parliament Itrsquos taken grit and dedication but Irsquom 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

benefits I hope that policy-makers everywhere will read this report understand

how to tackle the challenge of spinal cord injury and take the necessary actionsrdquo

TANNI GREY983085THOMPSON PARALYMPIC MEDALLIST AND ME MBER OF UK HOUSE O F LORDS

ldquoDisability 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

lsquogenerouslyrsquo gives what he does not need while solidarity is given between equals

in a horizontal way among human beings who are different but equal in their

rights We need to eliminate the barriers construct a way to liberty the liberty of

being different This is true inclusionrdquo

LENIacuteN MORENO FORMER VICE983085PRESIDENT OF THE REPUBLIC OF ECUADOR

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 716

v

Summary

11 respectively Work-related accidents contribute to at least 15 o all SCIcases Across all regions sport and leisure activities contribute less than 10o all cases o SCI Attempted suicide has been shown to contribute to over10 o SCI cases in some countries uberculosis may account or up to 20o all NSCI cases in some contexts

People with SCI die earlier Studies have indicated that people with SCI are2 to 5 times more likely to die prematurely than people without SCI Peoplewith tetraplegia are at higher risk than people with paraplegia and peoplewith complete lesions are at higher risk than people with incomplete lesionsMortality is particularly high in the first year afer injury (8) and mortalityrates are strongly affected by the capacity o the health-care system especiallyemergency care Studies on in-hospital average mortality rates in low-incomecountries are at least three times as high as those in the high-resource settings

In low-income countries preventable secondary conditions remain themain causes of death for people with SCI (9) In high-income countries themain causes o death or people with SCI have changed over recent decades(10 11) with urological complications in decline and the leading cause odeath shifing to respiratory problems pneumonia or influenza in particularHeart disease suicide and neurological problems are other associated causeso death

2 Personal and social impacts of spinal cord injury areconsiderable

SCI has a debilitating psychological impact 20ndash30 o people with SCI show

clinically significant symptoms o depression which is substantially higherthan the general population (12) although the majority o people eventuallyadapt well to SCI

People with SCI have a narrower margin of health due partly to preventablecomplications such as urinary tract inections and pressure sores

SCI is associated with family breakdown but also family resilience Imme-diately afer injury SCI can have a negative impact on personal relationshipsand is associated with a higher rate o divorce However post-SCI relation-ships generally do better Carers o children and young people with spinabifida or traumatic SCI typically experience isolation and stress

Lower participation in school Children and young people with spina bifida

or acquired SCI are less likely to attend school and less likely to participate intertiary education Tey ace obstacles in the transition between school andtertiary education and between education and employment

SCI is associated with lower rates of economic participation Average globalemployment rates or people with SCI are only 37 with a high o 51 inEurope (13)

Costs of SCI are higher than for comparable conditions such as dementiamultiple sclerosis cerebral palsy and bipolar disorder In Australia the lie-time costs (including the financial costs and burden-o-disease costs) were

8172019 Who Nmh Vip 1303 Eng 2

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vi

International Perspectives on Spinal Cord Injury

estimated to be AUS$5 million or a person with paraplegia and AUS$95 mil-lion or a person with tetraplegia (14) Indirect costs such as lost earningsgenerally exceed direct costs

3 Barriers to services and environments restrict participationand undermine quality of life

Inadequate policy and provision Ofen appropriate policies and servicesare lacking in areas such as inclusive education accessible environments andrehabilitation For example in low- and middle- income countries only 5minus15o people have the assistive devices that they need (15) In a Netherlands studymore than hal o respondents with SCI were delayed leaving in-patient reha-bilitation due to delays in obtaining wheelchairs (16 )

Lack of funding One Nigerian study or instance showed that or more than40 o respondents with SCI acute treatment costs represented over 50 otheir annual income (17 ) Similarly cost is one o the main barriers when itcomes to assistive devices

Physical access barriers Homes schools workplaces and even hospitals areofen inaccessible to people who use wheelchairs Inaccessibility o transportis a major obstacle to participating in society particularly or those who livein rural areas Tis prevents people with SCI leaving hospital or nursing homeand becoming independent

Negative attitudes It may be alsely perceived or example that tetraplegia isa ate worse than death or that people in wheelchairs cannot work or cannothave intimate relations Even amily members may have negative attitudes and

low expectations Ofen prejudice arises rom lack o knowledge and lack ocontact Lack of knowledge Rehabilitation providers may lack knowledge and skills

relevant to SCI For example lack o expertise among service providers canhinder people with SCI receiving appropriate assistive technologies Primarycare staff may not know about preventable complications in SCI and diag-nostic overshadowing can mean that people with SCI do not receive screeningor treatment or their general health needs More evidence is needed on whatworks both in prevention and management o SCI

4 Spinal cord injury is preventable

Death and disability associated with road traffic crashes can be reduced through the sae systems approach which highlights what can be done toimprove road environments vehicle saety and driver behaviour (18) Forexample the worldrsquos first compulsory seat-belt laws were introduced in Aus-tralia in 1970 and in conjunction with government efforts to improve roaddesign and regulations on car saety there was a 4 pa drop in the annualincidence o SCI rom road traffic crashes (19)

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 916

vii

Summary

Workplace codes on health and safety can reduce injuries caused in miningconstruction and agriculture

Limiting access to guns and knives prevents injuries and reduces cost to soci-ety Measures or limiting access include bans licensing schemes a mini-mum age or buyers background checks and sae storage requirements Tesemeasures have been successully implemented in Austria Brazil and somestates in the USA

Injuries from sporting and leisure activities can be minimized through betterdesign (eg o swimming pools play equipment and ski runs) saety inorma-tion (eg dangers o diving into shallow water training o rugby coaches) andsports-wide awareness

Early detection and treatment can reduce the prevalence of spinal B (20)as well as spinal tumours arising rom cancer

Improved nutrition reduces the incidence of spina bifida and other neuraltube defects (21) Voluntary periconceptional oral olate supplementation(three months beore and afer conception) has been shown to reduce the rateo inants being born with neural tube deects including spina bifida (22 23)Many countries that have a policy o supplementation o wheat flour with olicacid have also seen a all in the incidence o spina bifida (24ndash27 )

5 Spinal cord injury is survivable

Appropriate pre-hospital care is vital for immediate survival Quick rec-ognition early evaluation and appropriate management o suspected SCIare required Pre-hospital management in traumatic SCI requires a rapid

evaluation including measurement o vital signs and level o consciousnessinitiation o injury management including stabilization o vital unctionsimmobilization o the spine to preserve neurological unction until long-termspinal stability can be established and control o bleeding body tempera-ture and pain and prompt and sae access to the health-care system Peopleshould ideally arrive in an acute care setting within two hours which relieson adequate emergency and rescue services

Acute care ensures stabilization Acute care may involve surgical interventionor conservative management but accurate diagnosis o SCI and co-occurringconditions is the vital first step Many actors should be taken into consid-eration to determine the most appropriate management approach including

level o injury type o racture degree o instability presence o neural com-pression impact o other injuries surgical timing availability o resourcessuch as expertise and appropriate medical and surgical acilities and benefitsand risks In all cases people with SCI and their amily members should begiven an inormed choice between conservative and surgical management

Ongoing health care maintenance is required for survival and good qualityof life Te individual can avoid or survive the complications o SCI such asurinary tract inections and pressure ulcers remain healthy and enjoy a longand ull lie with access to ongoing health care People with SCI ofen have

8172019 Who Nmh Vip 1303 Eng 2

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viii

International Perspectives on Spinal Cord Injury

a narrower margin o health or example a raised risk o chest inectionsand cardiovascular disease Without access to basic health care together withproducts such as catheters and appropriate cushions ollowed up by advice onhealthy living a person with SCI is more likely to die prematurely

6 Spinal cord injury need not prevent good health and socialinclusion

A person with SCI who has access to health care personal assistance i requiredand assistive devices should be able to return to study live independently makean economic contribution and participate in amily and community lie Once stabilized there is a need for access to relevant acute and post-acute

medical care and rehabilitation services to ensure that unctioning is maxi-mized and that the individual can become as independent as possible Tereare different models o service delivery but specialist centres have been shownto reduce costs result in ewer complications and result in ewer rehospi-talizations compared to nonspecialized services People with SCI give highpriority to achieving control o bladder and bowel unctions Terapy canenhance unction in lower and upper limbs and teach techniques or achiev-ing independence in everyday activities Mental health services and advice areimportant depression is associated with ewer improvements in unctioningand increased rate o health complications Inormation and support withsexual and reproductive health needs should also be part o rehabilitation

Appropriate assistive devices are a vital component of rehabilitation Forexample more than 90 o people with SCI require some orm o wheelchair

Tese must be appropriate or the individual and or the setting Other assis-tive technology needs include modifications in and around the home envi-ronmental control and sometimes communication systems or people withtetraplegia

Services should support return to education and employment Sel-helpgroups accessible buildings and transport vocational rehabilitation and anti-discrimination measures can ensure that children and adults can return tostudy live independently make an economic contribution and participate inamily and community lie

8172019 Who Nmh Vip 1303 Eng 2

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ix

Summary

Recommendations

1 Improve health sector response to spinal cord injury

Tis requires building capacity o the health and rehabilitation workorce strength-ening prevention and early response services ensuring that appropriate medicalservices and rehabilitation services are available and accessible improving coordi-nation to enhance effectiveness and save costs extending health insurance cover-age so that SCI does not lead to catastrophic health expenditure and identiyingstrategies or the supply o appropriate assistive technology and health products

2 Empower people with spinal cord injury and their families

People with SCI need inormation so that they can take responsibility or theirown health care afer discharge Inormation should be shared with amily mem-bers during rehabilitation Support or amily members and other caregivers canprevent stress and burnout

In high-income countries an independent living model o personal assistancecan be empowering and cost-effective or people with SCI who have high sup-port needs Community-based rehabilitation (CBR) is important in low-incomesettings In all settings social networks sel-help groups and disabled peoplersquosorganizations can promote empowerment and participation Access to physicalactivities and sport can promote both physiological and psychological well-being

3 Challenge negative attitudes to people with spinal cord injury

As part o general disability awareness campaigns this can involve a range ointerventions including undergraduate education or doctors and other healthproessionals classroom activities to reduce stigma and awareness campaignsthrough media

4 Ensure that buildings transport and information areaccessible

Tis requires enorceable national access standards teaching architects anddesigners about universal design improving access to social housing promoting

ldquouniversally designedrdquo bus rapid transport mandating accessibility or privatetaxis and using organizations o persons with disabilities to consult on acces-sibility and monitor progress

5 Support employment and self-employment

Vocational training flexible working supported employment and community-based rehabilitation projects with a ocus on livelihood are all promising optionsor people with SCI returning to work Social protection schemes should be

8172019 Who Nmh Vip 1303 Eng 2

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x

International Perspectives on Spinal Cord Injury

available depending on the setting and the economic status o the individual butshould not act as a disincentive to return to work

6 Promote appropriate research and data collection

Tere is a pressing need to both increase and improve routine data collectionand research on SCI Disaggregated statistics on SCI using standardized ICECIterminology can assist incident trend analysis and help in monitoring o policyresponses SCI registries which compile data directly rom hospitals togetherwith longitudinal population-based cohort studies covering major lie areas arethe best ways o collecting SCI data At service level data are required on costsoutcomes and costbenefits

7 Implement recommendations

Implementing these recommendations requires the involvement o different sec-tors ndash health education social protection labour transport and housing ndash anddifferent actors ndash governments civil society organizations (including organiza-tions o persons with disabilities) proessionals the private sector and peoplewith SCI and their amilies Sectors and actors need to work together because mul-tidisciplinary teamwork will maximize success It is essential that countries tailortheir actions to their specific contexts Where countries are limited by resourceconstraints some o the priority actions particularly those requiring technicalassistance and capacity-building can be included within the ramework o inter-national cooperation

Conclusion

While the incidence o traumatic and non-traumatic SCI can and should bereduced there will always be new cases o SCI SCI will continue to affect mainlyindividuals in the prime o lie Ensuring an adequate medical and rehabilitationresponse ollowed by supportive services and accessible environments wil l helpminimize the disruption to people with SCI and their amilies Tese measureswill also reduce the overall costs to society in terms o dependency and lost pro-ductivity and to the individual in terms o lower sel-esteem and impaired quality

o lie SCI is preventable survivable and need not preclude good health and socialinclusion But action by governments and other stakeholders is urgently requiredWithout effective action SCI will remain all too ofen a catastrophe

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xi

Summary

References1 United Nations Department of Economic and Social Affairs Population Division World population

prospec ts the 2012 revision DVD Edition 2013

2 Dahlberg A et al Prevalence of spinal cord injury in Helsinki Spinal Cord 2005 4347-50 doi

httpdxdoiorg101038sjsc3101616 PMID15520842

3 OrsquoConnor PJ Prevalence of spinal cord injury in Australia Spinal Cord 2005 4342-46 doi http

dxdoiorg101038sjsc3101666 PMID15326472

4 Noonan VK et al Incidence and prevalence of spinal cord injury in Canada a national per-

spective Neuroepidemiology 2012 38219-226 doi httpdxdoiorg101159000336014

PMID22555590

5 New PW Farry A Baxter D Noonan VK Prevalence of non-traumatic spinal cord injury in Victoria

Australia Spinal Cord 2013 5199-102 doi httpdxdoiorg101038sc201261 PMID22665222

6 Middleton JW et al Life expectancy after spinal cord injury a 50-year study Spinal Cord 2012

50803-811 doi httpdxdoiorg101038sc201255 PMID22584284

7 Gosselin RA Coppotelli C A follow-up study of patients with spinal cord injury in Sierra Leone

International Orthopaedics 2005 29330-332 doi httpdxdoiorg101007s00264-005-

0665-3 PMID16094542

8 Lidal IB et al Mortality after spinal cord injury in Norway Journal of Rehab ilitat ion Medicine 2007

39145-151 doi httpdxdoiorg10234016501977-0017 PMID17351697

9 Rathore MFA Spinal cord injuries in the developing world In JH Stone M Blouin eds

International Encyclopedia of Rehabilitation 2013 Available online httpcirriebuffaloedu

encyclopediaenarticle141

10 Hagen EM Rekand T Gilhus NE Groslashnning M Traumatic spinal cord injuriesndashincidence mecha-

nisms and course Tidsskrift for Den Norske Laegeforening 2012 132831-837 doi httpdxdoi

org104045tidsskr100859 PMID22511097

11 Leal-Filho MB et al Spinal cord injury epidemiological study of 386 cases with emphasis on

those patients admitted more than four hours after the trauma Arquivos de Neuro-Ps iquiatria

2008 66 2B365-368 doi httpdxdoiorg101590S0004-282X2008000300016 PMID18641873

12 Post MWM van Leeuwen CMC Psychosocial issues in spinal cord injury a review Spinal Cord

2012 50382-389 doi httpdxdoiorg101038sc2011182 PMID22270190

13 Young AE Murphy GC Employment status after spinal cord injury (1992ndash2005) a review with impli-

cations for interpretation evaluation further research and clinical practice International Journal of

Rehabilitation 2009 321-11 doi httpdxdoiorg101097MRR0b013e32831c8b19 PMID19057392

14 Access Economics for the Victorian Neurotrauma Initiative The economic cost of spinal cord

injury and traumatic brain injury in Australia 2009 (httpwwwtacvicgovauabout-the-tac

our-organisationresearchtac-neurotrauma-researchvnithe20economic20cost20of20spinal-

20cord20injury20and20traumatic20brain20injury20in20australiapdf accessed 9 January 2013)

15 WHO Guidelines on the provision of manual wheelchairs in less-resourced settings Geneva World

Health Organization 2008

16 Post MWM van Asbeck FW van Dijk AJ Schrijvers AJ Services for spinal cord injured availability and

satisfaction Spinal Cord 1997 35109-115 doi httpdxdoiorg101038sjsc3100362 PMID9044519

17 Kawu AA et al A cost analysis of conservative management of spinal cord-injured patients in

Nigeria Spinal Cord 2011 491134-1137 doi httpdxdoiorg101038sc201169 PMID2169127818 Peden M et al eds World report on road traffic injury prevention Geneva World Health

Organization 2004

19 OrsquoConnor P Trends in spinal cord injury Accident Analysis and Prevention 2006 3871ndash77 doi

httpdxdoiorg101016jaap200503025 PMID16111641

20 Harries AD et al The HIV-associated tuberculosis epidemicndashwhen will we act Lancet 2010

3751906-1919 doi httpdxdoiorg101016S0140-6736(10)60409-6 PMID20488516

21 Yi Y Lindemann M Colligs A Snowball C Economic burden of neural tube defects and impact of

prevention with folic acid a literature review European Journal of Pediatrics 2011 1701391-1400

doi httpdxdoiorg101007s00431-011-1492-8 PMID21594574

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xii

International Perspectives on Spinal Cord Injury

22 Toriello HV Policy and Practice Guideline Committee of the American College of Medical

Genetics Policy statement on folic acid and neural tube defects Genetics in Medicine 2011

13593-596 doi httpdxdoiorg101097GIM0b013e31821d4188 PMID21552133

23 De-Regil LM Fernaacutendez-Gaxiola AC Dowswell T Pentildea-Rosas JP Effects and safety of pericon-

ceptional folate supplementation for preventing birth defects Cochrane Database of Systematic

Reviews 2010 6CD007950 PMID2092776724 Flour Fortification Initiative FFI Database Atlanta 2012 (httpwwwsphemoryeduwheatflour

globalmapphp accessed 28 May 2012)

25 Williams LJ et al Decline in the prevalence of spina bifida and anencephaly by raceethnicity 1995ndash

2002 Pediatrics 2005 116580-586 doi httpdxdoiorg101542peds2005-0592 PMID16140696

26 Berry RJ Bailey L Mulinare J Bower C Folic Acid Working Group Fortification of flour with folic

acid Food and Nutrition Bulletin 2010 31 SupplS22-S35 PMID20629350

27 Alasfoor D Elsayed MK Mohammed AJ Spina bifida and birth outcome before and after

fortification of flour with iron and folic acid in Oman Eastern Mediterranean Health Journal 2010

16533-538 PMID20799554

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1516

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1616

WHONMHVIP1303

ldquoSpinal cord injury need not be a death sentence But this requires effective

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 to

improved understanding and therefore better practicerdquo

SHUAIB CHALKEN UN SPECIAL RAPPORTEUR ON DISABILITY

ldquoSpina bifida is no obstacle to a full and useful life Irsquove been a Paralympic championa wife a mother a broadcaster and a member of the upper house of the British

Parliament Itrsquos taken grit and dedication but Irsquom 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

benefits I hope that policy-makers everywhere will read this report understand

how to tackle the challenge of spinal cord injury and take the necessary actionsrdquo

TANNI GREY983085THOMPSON PARALYMPIC MEDALLIST AND ME MBER OF UK HOUSE O F LORDS

ldquoDisability 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

lsquogenerouslyrsquo gives what he does not need while solidarity is given between equals

in a horizontal way among human beings who are different but equal in their

rights We need to eliminate the barriers construct a way to liberty the liberty of

being different This is true inclusionrdquo

LENIacuteN MORENO FORMER VICE983085PRESIDENT OF THE REPUBLIC OF ECUADOR

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 816

vi

International Perspectives on Spinal Cord Injury

estimated to be AUS$5 million or a person with paraplegia and AUS$95 mil-lion or a person with tetraplegia (14) Indirect costs such as lost earningsgenerally exceed direct costs

3 Barriers to services and environments restrict participationand undermine quality of life

Inadequate policy and provision Ofen appropriate policies and servicesare lacking in areas such as inclusive education accessible environments andrehabilitation For example in low- and middle- income countries only 5minus15o people have the assistive devices that they need (15) In a Netherlands studymore than hal o respondents with SCI were delayed leaving in-patient reha-bilitation due to delays in obtaining wheelchairs (16 )

Lack of funding One Nigerian study or instance showed that or more than40 o respondents with SCI acute treatment costs represented over 50 otheir annual income (17 ) Similarly cost is one o the main barriers when itcomes to assistive devices

Physical access barriers Homes schools workplaces and even hospitals areofen inaccessible to people who use wheelchairs Inaccessibility o transportis a major obstacle to participating in society particularly or those who livein rural areas Tis prevents people with SCI leaving hospital or nursing homeand becoming independent

Negative attitudes It may be alsely perceived or example that tetraplegia isa ate worse than death or that people in wheelchairs cannot work or cannothave intimate relations Even amily members may have negative attitudes and

low expectations Ofen prejudice arises rom lack o knowledge and lack ocontact Lack of knowledge Rehabilitation providers may lack knowledge and skills

relevant to SCI For example lack o expertise among service providers canhinder people with SCI receiving appropriate assistive technologies Primarycare staff may not know about preventable complications in SCI and diag-nostic overshadowing can mean that people with SCI do not receive screeningor treatment or their general health needs More evidence is needed on whatworks both in prevention and management o SCI

4 Spinal cord injury is preventable

Death and disability associated with road traffic crashes can be reduced through the sae systems approach which highlights what can be done toimprove road environments vehicle saety and driver behaviour (18) Forexample the worldrsquos first compulsory seat-belt laws were introduced in Aus-tralia in 1970 and in conjunction with government efforts to improve roaddesign and regulations on car saety there was a 4 pa drop in the annualincidence o SCI rom road traffic crashes (19)

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 916

vii

Summary

Workplace codes on health and safety can reduce injuries caused in miningconstruction and agriculture

Limiting access to guns and knives prevents injuries and reduces cost to soci-ety Measures or limiting access include bans licensing schemes a mini-mum age or buyers background checks and sae storage requirements Tesemeasures have been successully implemented in Austria Brazil and somestates in the USA

Injuries from sporting and leisure activities can be minimized through betterdesign (eg o swimming pools play equipment and ski runs) saety inorma-tion (eg dangers o diving into shallow water training o rugby coaches) andsports-wide awareness

Early detection and treatment can reduce the prevalence of spinal B (20)as well as spinal tumours arising rom cancer

Improved nutrition reduces the incidence of spina bifida and other neuraltube defects (21) Voluntary periconceptional oral olate supplementation(three months beore and afer conception) has been shown to reduce the rateo inants being born with neural tube deects including spina bifida (22 23)Many countries that have a policy o supplementation o wheat flour with olicacid have also seen a all in the incidence o spina bifida (24ndash27 )

5 Spinal cord injury is survivable

Appropriate pre-hospital care is vital for immediate survival Quick rec-ognition early evaluation and appropriate management o suspected SCIare required Pre-hospital management in traumatic SCI requires a rapid

evaluation including measurement o vital signs and level o consciousnessinitiation o injury management including stabilization o vital unctionsimmobilization o the spine to preserve neurological unction until long-termspinal stability can be established and control o bleeding body tempera-ture and pain and prompt and sae access to the health-care system Peopleshould ideally arrive in an acute care setting within two hours which relieson adequate emergency and rescue services

Acute care ensures stabilization Acute care may involve surgical interventionor conservative management but accurate diagnosis o SCI and co-occurringconditions is the vital first step Many actors should be taken into consid-eration to determine the most appropriate management approach including

level o injury type o racture degree o instability presence o neural com-pression impact o other injuries surgical timing availability o resourcessuch as expertise and appropriate medical and surgical acilities and benefitsand risks In all cases people with SCI and their amily members should begiven an inormed choice between conservative and surgical management

Ongoing health care maintenance is required for survival and good qualityof life Te individual can avoid or survive the complications o SCI such asurinary tract inections and pressure ulcers remain healthy and enjoy a longand ull lie with access to ongoing health care People with SCI ofen have

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1016

viii

International Perspectives on Spinal Cord Injury

a narrower margin o health or example a raised risk o chest inectionsand cardiovascular disease Without access to basic health care together withproducts such as catheters and appropriate cushions ollowed up by advice onhealthy living a person with SCI is more likely to die prematurely

6 Spinal cord injury need not prevent good health and socialinclusion

A person with SCI who has access to health care personal assistance i requiredand assistive devices should be able to return to study live independently makean economic contribution and participate in amily and community lie Once stabilized there is a need for access to relevant acute and post-acute

medical care and rehabilitation services to ensure that unctioning is maxi-mized and that the individual can become as independent as possible Tereare different models o service delivery but specialist centres have been shownto reduce costs result in ewer complications and result in ewer rehospi-talizations compared to nonspecialized services People with SCI give highpriority to achieving control o bladder and bowel unctions Terapy canenhance unction in lower and upper limbs and teach techniques or achiev-ing independence in everyday activities Mental health services and advice areimportant depression is associated with ewer improvements in unctioningand increased rate o health complications Inormation and support withsexual and reproductive health needs should also be part o rehabilitation

Appropriate assistive devices are a vital component of rehabilitation Forexample more than 90 o people with SCI require some orm o wheelchair

Tese must be appropriate or the individual and or the setting Other assis-tive technology needs include modifications in and around the home envi-ronmental control and sometimes communication systems or people withtetraplegia

Services should support return to education and employment Sel-helpgroups accessible buildings and transport vocational rehabilitation and anti-discrimination measures can ensure that children and adults can return tostudy live independently make an economic contribution and participate inamily and community lie

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1116

ix

Summary

Recommendations

1 Improve health sector response to spinal cord injury

Tis requires building capacity o the health and rehabilitation workorce strength-ening prevention and early response services ensuring that appropriate medicalservices and rehabilitation services are available and accessible improving coordi-nation to enhance effectiveness and save costs extending health insurance cover-age so that SCI does not lead to catastrophic health expenditure and identiyingstrategies or the supply o appropriate assistive technology and health products

2 Empower people with spinal cord injury and their families

People with SCI need inormation so that they can take responsibility or theirown health care afer discharge Inormation should be shared with amily mem-bers during rehabilitation Support or amily members and other caregivers canprevent stress and burnout

In high-income countries an independent living model o personal assistancecan be empowering and cost-effective or people with SCI who have high sup-port needs Community-based rehabilitation (CBR) is important in low-incomesettings In all settings social networks sel-help groups and disabled peoplersquosorganizations can promote empowerment and participation Access to physicalactivities and sport can promote both physiological and psychological well-being

3 Challenge negative attitudes to people with spinal cord injury

As part o general disability awareness campaigns this can involve a range ointerventions including undergraduate education or doctors and other healthproessionals classroom activities to reduce stigma and awareness campaignsthrough media

4 Ensure that buildings transport and information areaccessible

Tis requires enorceable national access standards teaching architects anddesigners about universal design improving access to social housing promoting

ldquouniversally designedrdquo bus rapid transport mandating accessibility or privatetaxis and using organizations o persons with disabilities to consult on acces-sibility and monitor progress

5 Support employment and self-employment

Vocational training flexible working supported employment and community-based rehabilitation projects with a ocus on livelihood are all promising optionsor people with SCI returning to work Social protection schemes should be

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1216

x

International Perspectives on Spinal Cord Injury

available depending on the setting and the economic status o the individual butshould not act as a disincentive to return to work

6 Promote appropriate research and data collection

Tere is a pressing need to both increase and improve routine data collectionand research on SCI Disaggregated statistics on SCI using standardized ICECIterminology can assist incident trend analysis and help in monitoring o policyresponses SCI registries which compile data directly rom hospitals togetherwith longitudinal population-based cohort studies covering major lie areas arethe best ways o collecting SCI data At service level data are required on costsoutcomes and costbenefits

7 Implement recommendations

Implementing these recommendations requires the involvement o different sec-tors ndash health education social protection labour transport and housing ndash anddifferent actors ndash governments civil society organizations (including organiza-tions o persons with disabilities) proessionals the private sector and peoplewith SCI and their amilies Sectors and actors need to work together because mul-tidisciplinary teamwork will maximize success It is essential that countries tailortheir actions to their specific contexts Where countries are limited by resourceconstraints some o the priority actions particularly those requiring technicalassistance and capacity-building can be included within the ramework o inter-national cooperation

Conclusion

While the incidence o traumatic and non-traumatic SCI can and should bereduced there will always be new cases o SCI SCI will continue to affect mainlyindividuals in the prime o lie Ensuring an adequate medical and rehabilitationresponse ollowed by supportive services and accessible environments wil l helpminimize the disruption to people with SCI and their amilies Tese measureswill also reduce the overall costs to society in terms o dependency and lost pro-ductivity and to the individual in terms o lower sel-esteem and impaired quality

o lie SCI is preventable survivable and need not preclude good health and socialinclusion But action by governments and other stakeholders is urgently requiredWithout effective action SCI will remain all too ofen a catastrophe

8172019 Who Nmh Vip 1303 Eng 2

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xi

Summary

References1 United Nations Department of Economic and Social Affairs Population Division World population

prospec ts the 2012 revision DVD Edition 2013

2 Dahlberg A et al Prevalence of spinal cord injury in Helsinki Spinal Cord 2005 4347-50 doi

httpdxdoiorg101038sjsc3101616 PMID15520842

3 OrsquoConnor PJ Prevalence of spinal cord injury in Australia Spinal Cord 2005 4342-46 doi http

dxdoiorg101038sjsc3101666 PMID15326472

4 Noonan VK et al Incidence and prevalence of spinal cord injury in Canada a national per-

spective Neuroepidemiology 2012 38219-226 doi httpdxdoiorg101159000336014

PMID22555590

5 New PW Farry A Baxter D Noonan VK Prevalence of non-traumatic spinal cord injury in Victoria

Australia Spinal Cord 2013 5199-102 doi httpdxdoiorg101038sc201261 PMID22665222

6 Middleton JW et al Life expectancy after spinal cord injury a 50-year study Spinal Cord 2012

50803-811 doi httpdxdoiorg101038sc201255 PMID22584284

7 Gosselin RA Coppotelli C A follow-up study of patients with spinal cord injury in Sierra Leone

International Orthopaedics 2005 29330-332 doi httpdxdoiorg101007s00264-005-

0665-3 PMID16094542

8 Lidal IB et al Mortality after spinal cord injury in Norway Journal of Rehab ilitat ion Medicine 2007

39145-151 doi httpdxdoiorg10234016501977-0017 PMID17351697

9 Rathore MFA Spinal cord injuries in the developing world In JH Stone M Blouin eds

International Encyclopedia of Rehabilitation 2013 Available online httpcirriebuffaloedu

encyclopediaenarticle141

10 Hagen EM Rekand T Gilhus NE Groslashnning M Traumatic spinal cord injuriesndashincidence mecha-

nisms and course Tidsskrift for Den Norske Laegeforening 2012 132831-837 doi httpdxdoi

org104045tidsskr100859 PMID22511097

11 Leal-Filho MB et al Spinal cord injury epidemiological study of 386 cases with emphasis on

those patients admitted more than four hours after the trauma Arquivos de Neuro-Ps iquiatria

2008 66 2B365-368 doi httpdxdoiorg101590S0004-282X2008000300016 PMID18641873

12 Post MWM van Leeuwen CMC Psychosocial issues in spinal cord injury a review Spinal Cord

2012 50382-389 doi httpdxdoiorg101038sc2011182 PMID22270190

13 Young AE Murphy GC Employment status after spinal cord injury (1992ndash2005) a review with impli-

cations for interpretation evaluation further research and clinical practice International Journal of

Rehabilitation 2009 321-11 doi httpdxdoiorg101097MRR0b013e32831c8b19 PMID19057392

14 Access Economics for the Victorian Neurotrauma Initiative The economic cost of spinal cord

injury and traumatic brain injury in Australia 2009 (httpwwwtacvicgovauabout-the-tac

our-organisationresearchtac-neurotrauma-researchvnithe20economic20cost20of20spinal-

20cord20injury20and20traumatic20brain20injury20in20australiapdf accessed 9 January 2013)

15 WHO Guidelines on the provision of manual wheelchairs in less-resourced settings Geneva World

Health Organization 2008

16 Post MWM van Asbeck FW van Dijk AJ Schrijvers AJ Services for spinal cord injured availability and

satisfaction Spinal Cord 1997 35109-115 doi httpdxdoiorg101038sjsc3100362 PMID9044519

17 Kawu AA et al A cost analysis of conservative management of spinal cord-injured patients in

Nigeria Spinal Cord 2011 491134-1137 doi httpdxdoiorg101038sc201169 PMID2169127818 Peden M et al eds World report on road traffic injury prevention Geneva World Health

Organization 2004

19 OrsquoConnor P Trends in spinal cord injury Accident Analysis and Prevention 2006 3871ndash77 doi

httpdxdoiorg101016jaap200503025 PMID16111641

20 Harries AD et al The HIV-associated tuberculosis epidemicndashwhen will we act Lancet 2010

3751906-1919 doi httpdxdoiorg101016S0140-6736(10)60409-6 PMID20488516

21 Yi Y Lindemann M Colligs A Snowball C Economic burden of neural tube defects and impact of

prevention with folic acid a literature review European Journal of Pediatrics 2011 1701391-1400

doi httpdxdoiorg101007s00431-011-1492-8 PMID21594574

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1416

xii

International Perspectives on Spinal Cord Injury

22 Toriello HV Policy and Practice Guideline Committee of the American College of Medical

Genetics Policy statement on folic acid and neural tube defects Genetics in Medicine 2011

13593-596 doi httpdxdoiorg101097GIM0b013e31821d4188 PMID21552133

23 De-Regil LM Fernaacutendez-Gaxiola AC Dowswell T Pentildea-Rosas JP Effects and safety of pericon-

ceptional folate supplementation for preventing birth defects Cochrane Database of Systematic

Reviews 2010 6CD007950 PMID2092776724 Flour Fortification Initiative FFI Database Atlanta 2012 (httpwwwsphemoryeduwheatflour

globalmapphp accessed 28 May 2012)

25 Williams LJ et al Decline in the prevalence of spina bifida and anencephaly by raceethnicity 1995ndash

2002 Pediatrics 2005 116580-586 doi httpdxdoiorg101542peds2005-0592 PMID16140696

26 Berry RJ Bailey L Mulinare J Bower C Folic Acid Working Group Fortification of flour with folic

acid Food and Nutrition Bulletin 2010 31 SupplS22-S35 PMID20629350

27 Alasfoor D Elsayed MK Mohammed AJ Spina bifida and birth outcome before and after

fortification of flour with iron and folic acid in Oman Eastern Mediterranean Health Journal 2010

16533-538 PMID20799554

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1516

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1616

WHONMHVIP1303

ldquoSpinal cord injury need not be a death sentence But this requires effective

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 to

improved understanding and therefore better practicerdquo

SHUAIB CHALKEN UN SPECIAL RAPPORTEUR ON DISABILITY

ldquoSpina bifida is no obstacle to a full and useful life Irsquove been a Paralympic championa wife a mother a broadcaster and a member of the upper house of the British

Parliament Itrsquos taken grit and dedication but Irsquom 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

benefits I hope that policy-makers everywhere will read this report understand

how to tackle the challenge of spinal cord injury and take the necessary actionsrdquo

TANNI GREY983085THOMPSON PARALYMPIC MEDALLIST AND ME MBER OF UK HOUSE O F LORDS

ldquoDisability 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

lsquogenerouslyrsquo gives what he does not need while solidarity is given between equals

in a horizontal way among human beings who are different but equal in their

rights We need to eliminate the barriers construct a way to liberty the liberty of

being different This is true inclusionrdquo

LENIacuteN MORENO FORMER VICE983085PRESIDENT OF THE REPUBLIC OF ECUADOR

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 916

vii

Summary

Workplace codes on health and safety can reduce injuries caused in miningconstruction and agriculture

Limiting access to guns and knives prevents injuries and reduces cost to soci-ety Measures or limiting access include bans licensing schemes a mini-mum age or buyers background checks and sae storage requirements Tesemeasures have been successully implemented in Austria Brazil and somestates in the USA

Injuries from sporting and leisure activities can be minimized through betterdesign (eg o swimming pools play equipment and ski runs) saety inorma-tion (eg dangers o diving into shallow water training o rugby coaches) andsports-wide awareness

Early detection and treatment can reduce the prevalence of spinal B (20)as well as spinal tumours arising rom cancer

Improved nutrition reduces the incidence of spina bifida and other neuraltube defects (21) Voluntary periconceptional oral olate supplementation(three months beore and afer conception) has been shown to reduce the rateo inants being born with neural tube deects including spina bifida (22 23)Many countries that have a policy o supplementation o wheat flour with olicacid have also seen a all in the incidence o spina bifida (24ndash27 )

5 Spinal cord injury is survivable

Appropriate pre-hospital care is vital for immediate survival Quick rec-ognition early evaluation and appropriate management o suspected SCIare required Pre-hospital management in traumatic SCI requires a rapid

evaluation including measurement o vital signs and level o consciousnessinitiation o injury management including stabilization o vital unctionsimmobilization o the spine to preserve neurological unction until long-termspinal stability can be established and control o bleeding body tempera-ture and pain and prompt and sae access to the health-care system Peopleshould ideally arrive in an acute care setting within two hours which relieson adequate emergency and rescue services

Acute care ensures stabilization Acute care may involve surgical interventionor conservative management but accurate diagnosis o SCI and co-occurringconditions is the vital first step Many actors should be taken into consid-eration to determine the most appropriate management approach including

level o injury type o racture degree o instability presence o neural com-pression impact o other injuries surgical timing availability o resourcessuch as expertise and appropriate medical and surgical acilities and benefitsand risks In all cases people with SCI and their amily members should begiven an inormed choice between conservative and surgical management

Ongoing health care maintenance is required for survival and good qualityof life Te individual can avoid or survive the complications o SCI such asurinary tract inections and pressure ulcers remain healthy and enjoy a longand ull lie with access to ongoing health care People with SCI ofen have

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1016

viii

International Perspectives on Spinal Cord Injury

a narrower margin o health or example a raised risk o chest inectionsand cardiovascular disease Without access to basic health care together withproducts such as catheters and appropriate cushions ollowed up by advice onhealthy living a person with SCI is more likely to die prematurely

6 Spinal cord injury need not prevent good health and socialinclusion

A person with SCI who has access to health care personal assistance i requiredand assistive devices should be able to return to study live independently makean economic contribution and participate in amily and community lie Once stabilized there is a need for access to relevant acute and post-acute

medical care and rehabilitation services to ensure that unctioning is maxi-mized and that the individual can become as independent as possible Tereare different models o service delivery but specialist centres have been shownto reduce costs result in ewer complications and result in ewer rehospi-talizations compared to nonspecialized services People with SCI give highpriority to achieving control o bladder and bowel unctions Terapy canenhance unction in lower and upper limbs and teach techniques or achiev-ing independence in everyday activities Mental health services and advice areimportant depression is associated with ewer improvements in unctioningand increased rate o health complications Inormation and support withsexual and reproductive health needs should also be part o rehabilitation

Appropriate assistive devices are a vital component of rehabilitation Forexample more than 90 o people with SCI require some orm o wheelchair

Tese must be appropriate or the individual and or the setting Other assis-tive technology needs include modifications in and around the home envi-ronmental control and sometimes communication systems or people withtetraplegia

Services should support return to education and employment Sel-helpgroups accessible buildings and transport vocational rehabilitation and anti-discrimination measures can ensure that children and adults can return tostudy live independently make an economic contribution and participate inamily and community lie

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1116

ix

Summary

Recommendations

1 Improve health sector response to spinal cord injury

Tis requires building capacity o the health and rehabilitation workorce strength-ening prevention and early response services ensuring that appropriate medicalservices and rehabilitation services are available and accessible improving coordi-nation to enhance effectiveness and save costs extending health insurance cover-age so that SCI does not lead to catastrophic health expenditure and identiyingstrategies or the supply o appropriate assistive technology and health products

2 Empower people with spinal cord injury and their families

People with SCI need inormation so that they can take responsibility or theirown health care afer discharge Inormation should be shared with amily mem-bers during rehabilitation Support or amily members and other caregivers canprevent stress and burnout

In high-income countries an independent living model o personal assistancecan be empowering and cost-effective or people with SCI who have high sup-port needs Community-based rehabilitation (CBR) is important in low-incomesettings In all settings social networks sel-help groups and disabled peoplersquosorganizations can promote empowerment and participation Access to physicalactivities and sport can promote both physiological and psychological well-being

3 Challenge negative attitudes to people with spinal cord injury

As part o general disability awareness campaigns this can involve a range ointerventions including undergraduate education or doctors and other healthproessionals classroom activities to reduce stigma and awareness campaignsthrough media

4 Ensure that buildings transport and information areaccessible

Tis requires enorceable national access standards teaching architects anddesigners about universal design improving access to social housing promoting

ldquouniversally designedrdquo bus rapid transport mandating accessibility or privatetaxis and using organizations o persons with disabilities to consult on acces-sibility and monitor progress

5 Support employment and self-employment

Vocational training flexible working supported employment and community-based rehabilitation projects with a ocus on livelihood are all promising optionsor people with SCI returning to work Social protection schemes should be

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1216

x

International Perspectives on Spinal Cord Injury

available depending on the setting and the economic status o the individual butshould not act as a disincentive to return to work

6 Promote appropriate research and data collection

Tere is a pressing need to both increase and improve routine data collectionand research on SCI Disaggregated statistics on SCI using standardized ICECIterminology can assist incident trend analysis and help in monitoring o policyresponses SCI registries which compile data directly rom hospitals togetherwith longitudinal population-based cohort studies covering major lie areas arethe best ways o collecting SCI data At service level data are required on costsoutcomes and costbenefits

7 Implement recommendations

Implementing these recommendations requires the involvement o different sec-tors ndash health education social protection labour transport and housing ndash anddifferent actors ndash governments civil society organizations (including organiza-tions o persons with disabilities) proessionals the private sector and peoplewith SCI and their amilies Sectors and actors need to work together because mul-tidisciplinary teamwork will maximize success It is essential that countries tailortheir actions to their specific contexts Where countries are limited by resourceconstraints some o the priority actions particularly those requiring technicalassistance and capacity-building can be included within the ramework o inter-national cooperation

Conclusion

While the incidence o traumatic and non-traumatic SCI can and should bereduced there will always be new cases o SCI SCI will continue to affect mainlyindividuals in the prime o lie Ensuring an adequate medical and rehabilitationresponse ollowed by supportive services and accessible environments wil l helpminimize the disruption to people with SCI and their amilies Tese measureswill also reduce the overall costs to society in terms o dependency and lost pro-ductivity and to the individual in terms o lower sel-esteem and impaired quality

o lie SCI is preventable survivable and need not preclude good health and socialinclusion But action by governments and other stakeholders is urgently requiredWithout effective action SCI will remain all too ofen a catastrophe

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1316

xi

Summary

References1 United Nations Department of Economic and Social Affairs Population Division World population

prospec ts the 2012 revision DVD Edition 2013

2 Dahlberg A et al Prevalence of spinal cord injury in Helsinki Spinal Cord 2005 4347-50 doi

httpdxdoiorg101038sjsc3101616 PMID15520842

3 OrsquoConnor PJ Prevalence of spinal cord injury in Australia Spinal Cord 2005 4342-46 doi http

dxdoiorg101038sjsc3101666 PMID15326472

4 Noonan VK et al Incidence and prevalence of spinal cord injury in Canada a national per-

spective Neuroepidemiology 2012 38219-226 doi httpdxdoiorg101159000336014

PMID22555590

5 New PW Farry A Baxter D Noonan VK Prevalence of non-traumatic spinal cord injury in Victoria

Australia Spinal Cord 2013 5199-102 doi httpdxdoiorg101038sc201261 PMID22665222

6 Middleton JW et al Life expectancy after spinal cord injury a 50-year study Spinal Cord 2012

50803-811 doi httpdxdoiorg101038sc201255 PMID22584284

7 Gosselin RA Coppotelli C A follow-up study of patients with spinal cord injury in Sierra Leone

International Orthopaedics 2005 29330-332 doi httpdxdoiorg101007s00264-005-

0665-3 PMID16094542

8 Lidal IB et al Mortality after spinal cord injury in Norway Journal of Rehab ilitat ion Medicine 2007

39145-151 doi httpdxdoiorg10234016501977-0017 PMID17351697

9 Rathore MFA Spinal cord injuries in the developing world In JH Stone M Blouin eds

International Encyclopedia of Rehabilitation 2013 Available online httpcirriebuffaloedu

encyclopediaenarticle141

10 Hagen EM Rekand T Gilhus NE Groslashnning M Traumatic spinal cord injuriesndashincidence mecha-

nisms and course Tidsskrift for Den Norske Laegeforening 2012 132831-837 doi httpdxdoi

org104045tidsskr100859 PMID22511097

11 Leal-Filho MB et al Spinal cord injury epidemiological study of 386 cases with emphasis on

those patients admitted more than four hours after the trauma Arquivos de Neuro-Ps iquiatria

2008 66 2B365-368 doi httpdxdoiorg101590S0004-282X2008000300016 PMID18641873

12 Post MWM van Leeuwen CMC Psychosocial issues in spinal cord injury a review Spinal Cord

2012 50382-389 doi httpdxdoiorg101038sc2011182 PMID22270190

13 Young AE Murphy GC Employment status after spinal cord injury (1992ndash2005) a review with impli-

cations for interpretation evaluation further research and clinical practice International Journal of

Rehabilitation 2009 321-11 doi httpdxdoiorg101097MRR0b013e32831c8b19 PMID19057392

14 Access Economics for the Victorian Neurotrauma Initiative The economic cost of spinal cord

injury and traumatic brain injury in Australia 2009 (httpwwwtacvicgovauabout-the-tac

our-organisationresearchtac-neurotrauma-researchvnithe20economic20cost20of20spinal-

20cord20injury20and20traumatic20brain20injury20in20australiapdf accessed 9 January 2013)

15 WHO Guidelines on the provision of manual wheelchairs in less-resourced settings Geneva World

Health Organization 2008

16 Post MWM van Asbeck FW van Dijk AJ Schrijvers AJ Services for spinal cord injured availability and

satisfaction Spinal Cord 1997 35109-115 doi httpdxdoiorg101038sjsc3100362 PMID9044519

17 Kawu AA et al A cost analysis of conservative management of spinal cord-injured patients in

Nigeria Spinal Cord 2011 491134-1137 doi httpdxdoiorg101038sc201169 PMID2169127818 Peden M et al eds World report on road traffic injury prevention Geneva World Health

Organization 2004

19 OrsquoConnor P Trends in spinal cord injury Accident Analysis and Prevention 2006 3871ndash77 doi

httpdxdoiorg101016jaap200503025 PMID16111641

20 Harries AD et al The HIV-associated tuberculosis epidemicndashwhen will we act Lancet 2010

3751906-1919 doi httpdxdoiorg101016S0140-6736(10)60409-6 PMID20488516

21 Yi Y Lindemann M Colligs A Snowball C Economic burden of neural tube defects and impact of

prevention with folic acid a literature review European Journal of Pediatrics 2011 1701391-1400

doi httpdxdoiorg101007s00431-011-1492-8 PMID21594574

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1416

xii

International Perspectives on Spinal Cord Injury

22 Toriello HV Policy and Practice Guideline Committee of the American College of Medical

Genetics Policy statement on folic acid and neural tube defects Genetics in Medicine 2011

13593-596 doi httpdxdoiorg101097GIM0b013e31821d4188 PMID21552133

23 De-Regil LM Fernaacutendez-Gaxiola AC Dowswell T Pentildea-Rosas JP Effects and safety of pericon-

ceptional folate supplementation for preventing birth defects Cochrane Database of Systematic

Reviews 2010 6CD007950 PMID2092776724 Flour Fortification Initiative FFI Database Atlanta 2012 (httpwwwsphemoryeduwheatflour

globalmapphp accessed 28 May 2012)

25 Williams LJ et al Decline in the prevalence of spina bifida and anencephaly by raceethnicity 1995ndash

2002 Pediatrics 2005 116580-586 doi httpdxdoiorg101542peds2005-0592 PMID16140696

26 Berry RJ Bailey L Mulinare J Bower C Folic Acid Working Group Fortification of flour with folic

acid Food and Nutrition Bulletin 2010 31 SupplS22-S35 PMID20629350

27 Alasfoor D Elsayed MK Mohammed AJ Spina bifida and birth outcome before and after

fortification of flour with iron and folic acid in Oman Eastern Mediterranean Health Journal 2010

16533-538 PMID20799554

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1516

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1616

WHONMHVIP1303

ldquoSpinal cord injury need not be a death sentence But this requires effective

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 to

improved understanding and therefore better practicerdquo

SHUAIB CHALKEN UN SPECIAL RAPPORTEUR ON DISABILITY

ldquoSpina bifida is no obstacle to a full and useful life Irsquove been a Paralympic championa wife a mother a broadcaster and a member of the upper house of the British

Parliament Itrsquos taken grit and dedication but Irsquom 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

benefits I hope that policy-makers everywhere will read this report understand

how to tackle the challenge of spinal cord injury and take the necessary actionsrdquo

TANNI GREY983085THOMPSON PARALYMPIC MEDALLIST AND ME MBER OF UK HOUSE O F LORDS

ldquoDisability 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

lsquogenerouslyrsquo gives what he does not need while solidarity is given between equals

in a horizontal way among human beings who are different but equal in their

rights We need to eliminate the barriers construct a way to liberty the liberty of

being different This is true inclusionrdquo

LENIacuteN MORENO FORMER VICE983085PRESIDENT OF THE REPUBLIC OF ECUADOR

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1016

viii

International Perspectives on Spinal Cord Injury

a narrower margin o health or example a raised risk o chest inectionsand cardiovascular disease Without access to basic health care together withproducts such as catheters and appropriate cushions ollowed up by advice onhealthy living a person with SCI is more likely to die prematurely

6 Spinal cord injury need not prevent good health and socialinclusion

A person with SCI who has access to health care personal assistance i requiredand assistive devices should be able to return to study live independently makean economic contribution and participate in amily and community lie Once stabilized there is a need for access to relevant acute and post-acute

medical care and rehabilitation services to ensure that unctioning is maxi-mized and that the individual can become as independent as possible Tereare different models o service delivery but specialist centres have been shownto reduce costs result in ewer complications and result in ewer rehospi-talizations compared to nonspecialized services People with SCI give highpriority to achieving control o bladder and bowel unctions Terapy canenhance unction in lower and upper limbs and teach techniques or achiev-ing independence in everyday activities Mental health services and advice areimportant depression is associated with ewer improvements in unctioningand increased rate o health complications Inormation and support withsexual and reproductive health needs should also be part o rehabilitation

Appropriate assistive devices are a vital component of rehabilitation Forexample more than 90 o people with SCI require some orm o wheelchair

Tese must be appropriate or the individual and or the setting Other assis-tive technology needs include modifications in and around the home envi-ronmental control and sometimes communication systems or people withtetraplegia

Services should support return to education and employment Sel-helpgroups accessible buildings and transport vocational rehabilitation and anti-discrimination measures can ensure that children and adults can return tostudy live independently make an economic contribution and participate inamily and community lie

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1116

ix

Summary

Recommendations

1 Improve health sector response to spinal cord injury

Tis requires building capacity o the health and rehabilitation workorce strength-ening prevention and early response services ensuring that appropriate medicalservices and rehabilitation services are available and accessible improving coordi-nation to enhance effectiveness and save costs extending health insurance cover-age so that SCI does not lead to catastrophic health expenditure and identiyingstrategies or the supply o appropriate assistive technology and health products

2 Empower people with spinal cord injury and their families

People with SCI need inormation so that they can take responsibility or theirown health care afer discharge Inormation should be shared with amily mem-bers during rehabilitation Support or amily members and other caregivers canprevent stress and burnout

In high-income countries an independent living model o personal assistancecan be empowering and cost-effective or people with SCI who have high sup-port needs Community-based rehabilitation (CBR) is important in low-incomesettings In all settings social networks sel-help groups and disabled peoplersquosorganizations can promote empowerment and participation Access to physicalactivities and sport can promote both physiological and psychological well-being

3 Challenge negative attitudes to people with spinal cord injury

As part o general disability awareness campaigns this can involve a range ointerventions including undergraduate education or doctors and other healthproessionals classroom activities to reduce stigma and awareness campaignsthrough media

4 Ensure that buildings transport and information areaccessible

Tis requires enorceable national access standards teaching architects anddesigners about universal design improving access to social housing promoting

ldquouniversally designedrdquo bus rapid transport mandating accessibility or privatetaxis and using organizations o persons with disabilities to consult on acces-sibility and monitor progress

5 Support employment and self-employment

Vocational training flexible working supported employment and community-based rehabilitation projects with a ocus on livelihood are all promising optionsor people with SCI returning to work Social protection schemes should be

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1216

x

International Perspectives on Spinal Cord Injury

available depending on the setting and the economic status o the individual butshould not act as a disincentive to return to work

6 Promote appropriate research and data collection

Tere is a pressing need to both increase and improve routine data collectionand research on SCI Disaggregated statistics on SCI using standardized ICECIterminology can assist incident trend analysis and help in monitoring o policyresponses SCI registries which compile data directly rom hospitals togetherwith longitudinal population-based cohort studies covering major lie areas arethe best ways o collecting SCI data At service level data are required on costsoutcomes and costbenefits

7 Implement recommendations

Implementing these recommendations requires the involvement o different sec-tors ndash health education social protection labour transport and housing ndash anddifferent actors ndash governments civil society organizations (including organiza-tions o persons with disabilities) proessionals the private sector and peoplewith SCI and their amilies Sectors and actors need to work together because mul-tidisciplinary teamwork will maximize success It is essential that countries tailortheir actions to their specific contexts Where countries are limited by resourceconstraints some o the priority actions particularly those requiring technicalassistance and capacity-building can be included within the ramework o inter-national cooperation

Conclusion

While the incidence o traumatic and non-traumatic SCI can and should bereduced there will always be new cases o SCI SCI will continue to affect mainlyindividuals in the prime o lie Ensuring an adequate medical and rehabilitationresponse ollowed by supportive services and accessible environments wil l helpminimize the disruption to people with SCI and their amilies Tese measureswill also reduce the overall costs to society in terms o dependency and lost pro-ductivity and to the individual in terms o lower sel-esteem and impaired quality

o lie SCI is preventable survivable and need not preclude good health and socialinclusion But action by governments and other stakeholders is urgently requiredWithout effective action SCI will remain all too ofen a catastrophe

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1316

xi

Summary

References1 United Nations Department of Economic and Social Affairs Population Division World population

prospec ts the 2012 revision DVD Edition 2013

2 Dahlberg A et al Prevalence of spinal cord injury in Helsinki Spinal Cord 2005 4347-50 doi

httpdxdoiorg101038sjsc3101616 PMID15520842

3 OrsquoConnor PJ Prevalence of spinal cord injury in Australia Spinal Cord 2005 4342-46 doi http

dxdoiorg101038sjsc3101666 PMID15326472

4 Noonan VK et al Incidence and prevalence of spinal cord injury in Canada a national per-

spective Neuroepidemiology 2012 38219-226 doi httpdxdoiorg101159000336014

PMID22555590

5 New PW Farry A Baxter D Noonan VK Prevalence of non-traumatic spinal cord injury in Victoria

Australia Spinal Cord 2013 5199-102 doi httpdxdoiorg101038sc201261 PMID22665222

6 Middleton JW et al Life expectancy after spinal cord injury a 50-year study Spinal Cord 2012

50803-811 doi httpdxdoiorg101038sc201255 PMID22584284

7 Gosselin RA Coppotelli C A follow-up study of patients with spinal cord injury in Sierra Leone

International Orthopaedics 2005 29330-332 doi httpdxdoiorg101007s00264-005-

0665-3 PMID16094542

8 Lidal IB et al Mortality after spinal cord injury in Norway Journal of Rehab ilitat ion Medicine 2007

39145-151 doi httpdxdoiorg10234016501977-0017 PMID17351697

9 Rathore MFA Spinal cord injuries in the developing world In JH Stone M Blouin eds

International Encyclopedia of Rehabilitation 2013 Available online httpcirriebuffaloedu

encyclopediaenarticle141

10 Hagen EM Rekand T Gilhus NE Groslashnning M Traumatic spinal cord injuriesndashincidence mecha-

nisms and course Tidsskrift for Den Norske Laegeforening 2012 132831-837 doi httpdxdoi

org104045tidsskr100859 PMID22511097

11 Leal-Filho MB et al Spinal cord injury epidemiological study of 386 cases with emphasis on

those patients admitted more than four hours after the trauma Arquivos de Neuro-Ps iquiatria

2008 66 2B365-368 doi httpdxdoiorg101590S0004-282X2008000300016 PMID18641873

12 Post MWM van Leeuwen CMC Psychosocial issues in spinal cord injury a review Spinal Cord

2012 50382-389 doi httpdxdoiorg101038sc2011182 PMID22270190

13 Young AE Murphy GC Employment status after spinal cord injury (1992ndash2005) a review with impli-

cations for interpretation evaluation further research and clinical practice International Journal of

Rehabilitation 2009 321-11 doi httpdxdoiorg101097MRR0b013e32831c8b19 PMID19057392

14 Access Economics for the Victorian Neurotrauma Initiative The economic cost of spinal cord

injury and traumatic brain injury in Australia 2009 (httpwwwtacvicgovauabout-the-tac

our-organisationresearchtac-neurotrauma-researchvnithe20economic20cost20of20spinal-

20cord20injury20and20traumatic20brain20injury20in20australiapdf accessed 9 January 2013)

15 WHO Guidelines on the provision of manual wheelchairs in less-resourced settings Geneva World

Health Organization 2008

16 Post MWM van Asbeck FW van Dijk AJ Schrijvers AJ Services for spinal cord injured availability and

satisfaction Spinal Cord 1997 35109-115 doi httpdxdoiorg101038sjsc3100362 PMID9044519

17 Kawu AA et al A cost analysis of conservative management of spinal cord-injured patients in

Nigeria Spinal Cord 2011 491134-1137 doi httpdxdoiorg101038sc201169 PMID2169127818 Peden M et al eds World report on road traffic injury prevention Geneva World Health

Organization 2004

19 OrsquoConnor P Trends in spinal cord injury Accident Analysis and Prevention 2006 3871ndash77 doi

httpdxdoiorg101016jaap200503025 PMID16111641

20 Harries AD et al The HIV-associated tuberculosis epidemicndashwhen will we act Lancet 2010

3751906-1919 doi httpdxdoiorg101016S0140-6736(10)60409-6 PMID20488516

21 Yi Y Lindemann M Colligs A Snowball C Economic burden of neural tube defects and impact of

prevention with folic acid a literature review European Journal of Pediatrics 2011 1701391-1400

doi httpdxdoiorg101007s00431-011-1492-8 PMID21594574

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1416

xii

International Perspectives on Spinal Cord Injury

22 Toriello HV Policy and Practice Guideline Committee of the American College of Medical

Genetics Policy statement on folic acid and neural tube defects Genetics in Medicine 2011

13593-596 doi httpdxdoiorg101097GIM0b013e31821d4188 PMID21552133

23 De-Regil LM Fernaacutendez-Gaxiola AC Dowswell T Pentildea-Rosas JP Effects and safety of pericon-

ceptional folate supplementation for preventing birth defects Cochrane Database of Systematic

Reviews 2010 6CD007950 PMID2092776724 Flour Fortification Initiative FFI Database Atlanta 2012 (httpwwwsphemoryeduwheatflour

globalmapphp accessed 28 May 2012)

25 Williams LJ et al Decline in the prevalence of spina bifida and anencephaly by raceethnicity 1995ndash

2002 Pediatrics 2005 116580-586 doi httpdxdoiorg101542peds2005-0592 PMID16140696

26 Berry RJ Bailey L Mulinare J Bower C Folic Acid Working Group Fortification of flour with folic

acid Food and Nutrition Bulletin 2010 31 SupplS22-S35 PMID20629350

27 Alasfoor D Elsayed MK Mohammed AJ Spina bifida and birth outcome before and after

fortification of flour with iron and folic acid in Oman Eastern Mediterranean Health Journal 2010

16533-538 PMID20799554

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1516

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1616

WHONMHVIP1303

ldquoSpinal cord injury need not be a death sentence But this requires effective

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 to

improved understanding and therefore better practicerdquo

SHUAIB CHALKEN UN SPECIAL RAPPORTEUR ON DISABILITY

ldquoSpina bifida is no obstacle to a full and useful life Irsquove been a Paralympic championa wife a mother a broadcaster and a member of the upper house of the British

Parliament Itrsquos taken grit and dedication but Irsquom 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

benefits I hope that policy-makers everywhere will read this report understand

how to tackle the challenge of spinal cord injury and take the necessary actionsrdquo

TANNI GREY983085THOMPSON PARALYMPIC MEDALLIST AND ME MBER OF UK HOUSE O F LORDS

ldquoDisability 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

lsquogenerouslyrsquo gives what he does not need while solidarity is given between equals

in a horizontal way among human beings who are different but equal in their

rights We need to eliminate the barriers construct a way to liberty the liberty of

being different This is true inclusionrdquo

LENIacuteN MORENO FORMER VICE983085PRESIDENT OF THE REPUBLIC OF ECUADOR

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1116

ix

Summary

Recommendations

1 Improve health sector response to spinal cord injury

Tis requires building capacity o the health and rehabilitation workorce strength-ening prevention and early response services ensuring that appropriate medicalservices and rehabilitation services are available and accessible improving coordi-nation to enhance effectiveness and save costs extending health insurance cover-age so that SCI does not lead to catastrophic health expenditure and identiyingstrategies or the supply o appropriate assistive technology and health products

2 Empower people with spinal cord injury and their families

People with SCI need inormation so that they can take responsibility or theirown health care afer discharge Inormation should be shared with amily mem-bers during rehabilitation Support or amily members and other caregivers canprevent stress and burnout

In high-income countries an independent living model o personal assistancecan be empowering and cost-effective or people with SCI who have high sup-port needs Community-based rehabilitation (CBR) is important in low-incomesettings In all settings social networks sel-help groups and disabled peoplersquosorganizations can promote empowerment and participation Access to physicalactivities and sport can promote both physiological and psychological well-being

3 Challenge negative attitudes to people with spinal cord injury

As part o general disability awareness campaigns this can involve a range ointerventions including undergraduate education or doctors and other healthproessionals classroom activities to reduce stigma and awareness campaignsthrough media

4 Ensure that buildings transport and information areaccessible

Tis requires enorceable national access standards teaching architects anddesigners about universal design improving access to social housing promoting

ldquouniversally designedrdquo bus rapid transport mandating accessibility or privatetaxis and using organizations o persons with disabilities to consult on acces-sibility and monitor progress

5 Support employment and self-employment

Vocational training flexible working supported employment and community-based rehabilitation projects with a ocus on livelihood are all promising optionsor people with SCI returning to work Social protection schemes should be

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1216

x

International Perspectives on Spinal Cord Injury

available depending on the setting and the economic status o the individual butshould not act as a disincentive to return to work

6 Promote appropriate research and data collection

Tere is a pressing need to both increase and improve routine data collectionand research on SCI Disaggregated statistics on SCI using standardized ICECIterminology can assist incident trend analysis and help in monitoring o policyresponses SCI registries which compile data directly rom hospitals togetherwith longitudinal population-based cohort studies covering major lie areas arethe best ways o collecting SCI data At service level data are required on costsoutcomes and costbenefits

7 Implement recommendations

Implementing these recommendations requires the involvement o different sec-tors ndash health education social protection labour transport and housing ndash anddifferent actors ndash governments civil society organizations (including organiza-tions o persons with disabilities) proessionals the private sector and peoplewith SCI and their amilies Sectors and actors need to work together because mul-tidisciplinary teamwork will maximize success It is essential that countries tailortheir actions to their specific contexts Where countries are limited by resourceconstraints some o the priority actions particularly those requiring technicalassistance and capacity-building can be included within the ramework o inter-national cooperation

Conclusion

While the incidence o traumatic and non-traumatic SCI can and should bereduced there will always be new cases o SCI SCI will continue to affect mainlyindividuals in the prime o lie Ensuring an adequate medical and rehabilitationresponse ollowed by supportive services and accessible environments wil l helpminimize the disruption to people with SCI and their amilies Tese measureswill also reduce the overall costs to society in terms o dependency and lost pro-ductivity and to the individual in terms o lower sel-esteem and impaired quality

o lie SCI is preventable survivable and need not preclude good health and socialinclusion But action by governments and other stakeholders is urgently requiredWithout effective action SCI will remain all too ofen a catastrophe

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1316

xi

Summary

References1 United Nations Department of Economic and Social Affairs Population Division World population

prospec ts the 2012 revision DVD Edition 2013

2 Dahlberg A et al Prevalence of spinal cord injury in Helsinki Spinal Cord 2005 4347-50 doi

httpdxdoiorg101038sjsc3101616 PMID15520842

3 OrsquoConnor PJ Prevalence of spinal cord injury in Australia Spinal Cord 2005 4342-46 doi http

dxdoiorg101038sjsc3101666 PMID15326472

4 Noonan VK et al Incidence and prevalence of spinal cord injury in Canada a national per-

spective Neuroepidemiology 2012 38219-226 doi httpdxdoiorg101159000336014

PMID22555590

5 New PW Farry A Baxter D Noonan VK Prevalence of non-traumatic spinal cord injury in Victoria

Australia Spinal Cord 2013 5199-102 doi httpdxdoiorg101038sc201261 PMID22665222

6 Middleton JW et al Life expectancy after spinal cord injury a 50-year study Spinal Cord 2012

50803-811 doi httpdxdoiorg101038sc201255 PMID22584284

7 Gosselin RA Coppotelli C A follow-up study of patients with spinal cord injury in Sierra Leone

International Orthopaedics 2005 29330-332 doi httpdxdoiorg101007s00264-005-

0665-3 PMID16094542

8 Lidal IB et al Mortality after spinal cord injury in Norway Journal of Rehab ilitat ion Medicine 2007

39145-151 doi httpdxdoiorg10234016501977-0017 PMID17351697

9 Rathore MFA Spinal cord injuries in the developing world In JH Stone M Blouin eds

International Encyclopedia of Rehabilitation 2013 Available online httpcirriebuffaloedu

encyclopediaenarticle141

10 Hagen EM Rekand T Gilhus NE Groslashnning M Traumatic spinal cord injuriesndashincidence mecha-

nisms and course Tidsskrift for Den Norske Laegeforening 2012 132831-837 doi httpdxdoi

org104045tidsskr100859 PMID22511097

11 Leal-Filho MB et al Spinal cord injury epidemiological study of 386 cases with emphasis on

those patients admitted more than four hours after the trauma Arquivos de Neuro-Ps iquiatria

2008 66 2B365-368 doi httpdxdoiorg101590S0004-282X2008000300016 PMID18641873

12 Post MWM van Leeuwen CMC Psychosocial issues in spinal cord injury a review Spinal Cord

2012 50382-389 doi httpdxdoiorg101038sc2011182 PMID22270190

13 Young AE Murphy GC Employment status after spinal cord injury (1992ndash2005) a review with impli-

cations for interpretation evaluation further research and clinical practice International Journal of

Rehabilitation 2009 321-11 doi httpdxdoiorg101097MRR0b013e32831c8b19 PMID19057392

14 Access Economics for the Victorian Neurotrauma Initiative The economic cost of spinal cord

injury and traumatic brain injury in Australia 2009 (httpwwwtacvicgovauabout-the-tac

our-organisationresearchtac-neurotrauma-researchvnithe20economic20cost20of20spinal-

20cord20injury20and20traumatic20brain20injury20in20australiapdf accessed 9 January 2013)

15 WHO Guidelines on the provision of manual wheelchairs in less-resourced settings Geneva World

Health Organization 2008

16 Post MWM van Asbeck FW van Dijk AJ Schrijvers AJ Services for spinal cord injured availability and

satisfaction Spinal Cord 1997 35109-115 doi httpdxdoiorg101038sjsc3100362 PMID9044519

17 Kawu AA et al A cost analysis of conservative management of spinal cord-injured patients in

Nigeria Spinal Cord 2011 491134-1137 doi httpdxdoiorg101038sc201169 PMID2169127818 Peden M et al eds World report on road traffic injury prevention Geneva World Health

Organization 2004

19 OrsquoConnor P Trends in spinal cord injury Accident Analysis and Prevention 2006 3871ndash77 doi

httpdxdoiorg101016jaap200503025 PMID16111641

20 Harries AD et al The HIV-associated tuberculosis epidemicndashwhen will we act Lancet 2010

3751906-1919 doi httpdxdoiorg101016S0140-6736(10)60409-6 PMID20488516

21 Yi Y Lindemann M Colligs A Snowball C Economic burden of neural tube defects and impact of

prevention with folic acid a literature review European Journal of Pediatrics 2011 1701391-1400

doi httpdxdoiorg101007s00431-011-1492-8 PMID21594574

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1416

xii

International Perspectives on Spinal Cord Injury

22 Toriello HV Policy and Practice Guideline Committee of the American College of Medical

Genetics Policy statement on folic acid and neural tube defects Genetics in Medicine 2011

13593-596 doi httpdxdoiorg101097GIM0b013e31821d4188 PMID21552133

23 De-Regil LM Fernaacutendez-Gaxiola AC Dowswell T Pentildea-Rosas JP Effects and safety of pericon-

ceptional folate supplementation for preventing birth defects Cochrane Database of Systematic

Reviews 2010 6CD007950 PMID2092776724 Flour Fortification Initiative FFI Database Atlanta 2012 (httpwwwsphemoryeduwheatflour

globalmapphp accessed 28 May 2012)

25 Williams LJ et al Decline in the prevalence of spina bifida and anencephaly by raceethnicity 1995ndash

2002 Pediatrics 2005 116580-586 doi httpdxdoiorg101542peds2005-0592 PMID16140696

26 Berry RJ Bailey L Mulinare J Bower C Folic Acid Working Group Fortification of flour with folic

acid Food and Nutrition Bulletin 2010 31 SupplS22-S35 PMID20629350

27 Alasfoor D Elsayed MK Mohammed AJ Spina bifida and birth outcome before and after

fortification of flour with iron and folic acid in Oman Eastern Mediterranean Health Journal 2010

16533-538 PMID20799554

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1516

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1616

WHONMHVIP1303

ldquoSpinal cord injury need not be a death sentence But this requires effective

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 to

improved understanding and therefore better practicerdquo

SHUAIB CHALKEN UN SPECIAL RAPPORTEUR ON DISABILITY

ldquoSpina bifida is no obstacle to a full and useful life Irsquove been a Paralympic championa wife a mother a broadcaster and a member of the upper house of the British

Parliament Itrsquos taken grit and dedication but Irsquom 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

benefits I hope that policy-makers everywhere will read this report understand

how to tackle the challenge of spinal cord injury and take the necessary actionsrdquo

TANNI GREY983085THOMPSON PARALYMPIC MEDALLIST AND ME MBER OF UK HOUSE O F LORDS

ldquoDisability 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

lsquogenerouslyrsquo gives what he does not need while solidarity is given between equals

in a horizontal way among human beings who are different but equal in their

rights We need to eliminate the barriers construct a way to liberty the liberty of

being different This is true inclusionrdquo

LENIacuteN MORENO FORMER VICE983085PRESIDENT OF THE REPUBLIC OF ECUADOR

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1216

x

International Perspectives on Spinal Cord Injury

available depending on the setting and the economic status o the individual butshould not act as a disincentive to return to work

6 Promote appropriate research and data collection

Tere is a pressing need to both increase and improve routine data collectionand research on SCI Disaggregated statistics on SCI using standardized ICECIterminology can assist incident trend analysis and help in monitoring o policyresponses SCI registries which compile data directly rom hospitals togetherwith longitudinal population-based cohort studies covering major lie areas arethe best ways o collecting SCI data At service level data are required on costsoutcomes and costbenefits

7 Implement recommendations

Implementing these recommendations requires the involvement o different sec-tors ndash health education social protection labour transport and housing ndash anddifferent actors ndash governments civil society organizations (including organiza-tions o persons with disabilities) proessionals the private sector and peoplewith SCI and their amilies Sectors and actors need to work together because mul-tidisciplinary teamwork will maximize success It is essential that countries tailortheir actions to their specific contexts Where countries are limited by resourceconstraints some o the priority actions particularly those requiring technicalassistance and capacity-building can be included within the ramework o inter-national cooperation

Conclusion

While the incidence o traumatic and non-traumatic SCI can and should bereduced there will always be new cases o SCI SCI will continue to affect mainlyindividuals in the prime o lie Ensuring an adequate medical and rehabilitationresponse ollowed by supportive services and accessible environments wil l helpminimize the disruption to people with SCI and their amilies Tese measureswill also reduce the overall costs to society in terms o dependency and lost pro-ductivity and to the individual in terms o lower sel-esteem and impaired quality

o lie SCI is preventable survivable and need not preclude good health and socialinclusion But action by governments and other stakeholders is urgently requiredWithout effective action SCI will remain all too ofen a catastrophe

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1316

xi

Summary

References1 United Nations Department of Economic and Social Affairs Population Division World population

prospec ts the 2012 revision DVD Edition 2013

2 Dahlberg A et al Prevalence of spinal cord injury in Helsinki Spinal Cord 2005 4347-50 doi

httpdxdoiorg101038sjsc3101616 PMID15520842

3 OrsquoConnor PJ Prevalence of spinal cord injury in Australia Spinal Cord 2005 4342-46 doi http

dxdoiorg101038sjsc3101666 PMID15326472

4 Noonan VK et al Incidence and prevalence of spinal cord injury in Canada a national per-

spective Neuroepidemiology 2012 38219-226 doi httpdxdoiorg101159000336014

PMID22555590

5 New PW Farry A Baxter D Noonan VK Prevalence of non-traumatic spinal cord injury in Victoria

Australia Spinal Cord 2013 5199-102 doi httpdxdoiorg101038sc201261 PMID22665222

6 Middleton JW et al Life expectancy after spinal cord injury a 50-year study Spinal Cord 2012

50803-811 doi httpdxdoiorg101038sc201255 PMID22584284

7 Gosselin RA Coppotelli C A follow-up study of patients with spinal cord injury in Sierra Leone

International Orthopaedics 2005 29330-332 doi httpdxdoiorg101007s00264-005-

0665-3 PMID16094542

8 Lidal IB et al Mortality after spinal cord injury in Norway Journal of Rehab ilitat ion Medicine 2007

39145-151 doi httpdxdoiorg10234016501977-0017 PMID17351697

9 Rathore MFA Spinal cord injuries in the developing world In JH Stone M Blouin eds

International Encyclopedia of Rehabilitation 2013 Available online httpcirriebuffaloedu

encyclopediaenarticle141

10 Hagen EM Rekand T Gilhus NE Groslashnning M Traumatic spinal cord injuriesndashincidence mecha-

nisms and course Tidsskrift for Den Norske Laegeforening 2012 132831-837 doi httpdxdoi

org104045tidsskr100859 PMID22511097

11 Leal-Filho MB et al Spinal cord injury epidemiological study of 386 cases with emphasis on

those patients admitted more than four hours after the trauma Arquivos de Neuro-Ps iquiatria

2008 66 2B365-368 doi httpdxdoiorg101590S0004-282X2008000300016 PMID18641873

12 Post MWM van Leeuwen CMC Psychosocial issues in spinal cord injury a review Spinal Cord

2012 50382-389 doi httpdxdoiorg101038sc2011182 PMID22270190

13 Young AE Murphy GC Employment status after spinal cord injury (1992ndash2005) a review with impli-

cations for interpretation evaluation further research and clinical practice International Journal of

Rehabilitation 2009 321-11 doi httpdxdoiorg101097MRR0b013e32831c8b19 PMID19057392

14 Access Economics for the Victorian Neurotrauma Initiative The economic cost of spinal cord

injury and traumatic brain injury in Australia 2009 (httpwwwtacvicgovauabout-the-tac

our-organisationresearchtac-neurotrauma-researchvnithe20economic20cost20of20spinal-

20cord20injury20and20traumatic20brain20injury20in20australiapdf accessed 9 January 2013)

15 WHO Guidelines on the provision of manual wheelchairs in less-resourced settings Geneva World

Health Organization 2008

16 Post MWM van Asbeck FW van Dijk AJ Schrijvers AJ Services for spinal cord injured availability and

satisfaction Spinal Cord 1997 35109-115 doi httpdxdoiorg101038sjsc3100362 PMID9044519

17 Kawu AA et al A cost analysis of conservative management of spinal cord-injured patients in

Nigeria Spinal Cord 2011 491134-1137 doi httpdxdoiorg101038sc201169 PMID2169127818 Peden M et al eds World report on road traffic injury prevention Geneva World Health

Organization 2004

19 OrsquoConnor P Trends in spinal cord injury Accident Analysis and Prevention 2006 3871ndash77 doi

httpdxdoiorg101016jaap200503025 PMID16111641

20 Harries AD et al The HIV-associated tuberculosis epidemicndashwhen will we act Lancet 2010

3751906-1919 doi httpdxdoiorg101016S0140-6736(10)60409-6 PMID20488516

21 Yi Y Lindemann M Colligs A Snowball C Economic burden of neural tube defects and impact of

prevention with folic acid a literature review European Journal of Pediatrics 2011 1701391-1400

doi httpdxdoiorg101007s00431-011-1492-8 PMID21594574

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1416

xii

International Perspectives on Spinal Cord Injury

22 Toriello HV Policy and Practice Guideline Committee of the American College of Medical

Genetics Policy statement on folic acid and neural tube defects Genetics in Medicine 2011

13593-596 doi httpdxdoiorg101097GIM0b013e31821d4188 PMID21552133

23 De-Regil LM Fernaacutendez-Gaxiola AC Dowswell T Pentildea-Rosas JP Effects and safety of pericon-

ceptional folate supplementation for preventing birth defects Cochrane Database of Systematic

Reviews 2010 6CD007950 PMID2092776724 Flour Fortification Initiative FFI Database Atlanta 2012 (httpwwwsphemoryeduwheatflour

globalmapphp accessed 28 May 2012)

25 Williams LJ et al Decline in the prevalence of spina bifida and anencephaly by raceethnicity 1995ndash

2002 Pediatrics 2005 116580-586 doi httpdxdoiorg101542peds2005-0592 PMID16140696

26 Berry RJ Bailey L Mulinare J Bower C Folic Acid Working Group Fortification of flour with folic

acid Food and Nutrition Bulletin 2010 31 SupplS22-S35 PMID20629350

27 Alasfoor D Elsayed MK Mohammed AJ Spina bifida and birth outcome before and after

fortification of flour with iron and folic acid in Oman Eastern Mediterranean Health Journal 2010

16533-538 PMID20799554

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1516

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1616

WHONMHVIP1303

ldquoSpinal cord injury need not be a death sentence But this requires effective

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 to

improved understanding and therefore better practicerdquo

SHUAIB CHALKEN UN SPECIAL RAPPORTEUR ON DISABILITY

ldquoSpina bifida is no obstacle to a full and useful life Irsquove been a Paralympic championa wife a mother a broadcaster and a member of the upper house of the British

Parliament Itrsquos taken grit and dedication but Irsquom 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

benefits I hope that policy-makers everywhere will read this report understand

how to tackle the challenge of spinal cord injury and take the necessary actionsrdquo

TANNI GREY983085THOMPSON PARALYMPIC MEDALLIST AND ME MBER OF UK HOUSE O F LORDS

ldquoDisability 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

lsquogenerouslyrsquo gives what he does not need while solidarity is given between equals

in a horizontal way among human beings who are different but equal in their

rights We need to eliminate the barriers construct a way to liberty the liberty of

being different This is true inclusionrdquo

LENIacuteN MORENO FORMER VICE983085PRESIDENT OF THE REPUBLIC OF ECUADOR

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1316

xi

Summary

References1 United Nations Department of Economic and Social Affairs Population Division World population

prospec ts the 2012 revision DVD Edition 2013

2 Dahlberg A et al Prevalence of spinal cord injury in Helsinki Spinal Cord 2005 4347-50 doi

httpdxdoiorg101038sjsc3101616 PMID15520842

3 OrsquoConnor PJ Prevalence of spinal cord injury in Australia Spinal Cord 2005 4342-46 doi http

dxdoiorg101038sjsc3101666 PMID15326472

4 Noonan VK et al Incidence and prevalence of spinal cord injury in Canada a national per-

spective Neuroepidemiology 2012 38219-226 doi httpdxdoiorg101159000336014

PMID22555590

5 New PW Farry A Baxter D Noonan VK Prevalence of non-traumatic spinal cord injury in Victoria

Australia Spinal Cord 2013 5199-102 doi httpdxdoiorg101038sc201261 PMID22665222

6 Middleton JW et al Life expectancy after spinal cord injury a 50-year study Spinal Cord 2012

50803-811 doi httpdxdoiorg101038sc201255 PMID22584284

7 Gosselin RA Coppotelli C A follow-up study of patients with spinal cord injury in Sierra Leone

International Orthopaedics 2005 29330-332 doi httpdxdoiorg101007s00264-005-

0665-3 PMID16094542

8 Lidal IB et al Mortality after spinal cord injury in Norway Journal of Rehab ilitat ion Medicine 2007

39145-151 doi httpdxdoiorg10234016501977-0017 PMID17351697

9 Rathore MFA Spinal cord injuries in the developing world In JH Stone M Blouin eds

International Encyclopedia of Rehabilitation 2013 Available online httpcirriebuffaloedu

encyclopediaenarticle141

10 Hagen EM Rekand T Gilhus NE Groslashnning M Traumatic spinal cord injuriesndashincidence mecha-

nisms and course Tidsskrift for Den Norske Laegeforening 2012 132831-837 doi httpdxdoi

org104045tidsskr100859 PMID22511097

11 Leal-Filho MB et al Spinal cord injury epidemiological study of 386 cases with emphasis on

those patients admitted more than four hours after the trauma Arquivos de Neuro-Ps iquiatria

2008 66 2B365-368 doi httpdxdoiorg101590S0004-282X2008000300016 PMID18641873

12 Post MWM van Leeuwen CMC Psychosocial issues in spinal cord injury a review Spinal Cord

2012 50382-389 doi httpdxdoiorg101038sc2011182 PMID22270190

13 Young AE Murphy GC Employment status after spinal cord injury (1992ndash2005) a review with impli-

cations for interpretation evaluation further research and clinical practice International Journal of

Rehabilitation 2009 321-11 doi httpdxdoiorg101097MRR0b013e32831c8b19 PMID19057392

14 Access Economics for the Victorian Neurotrauma Initiative The economic cost of spinal cord

injury and traumatic brain injury in Australia 2009 (httpwwwtacvicgovauabout-the-tac

our-organisationresearchtac-neurotrauma-researchvnithe20economic20cost20of20spinal-

20cord20injury20and20traumatic20brain20injury20in20australiapdf accessed 9 January 2013)

15 WHO Guidelines on the provision of manual wheelchairs in less-resourced settings Geneva World

Health Organization 2008

16 Post MWM van Asbeck FW van Dijk AJ Schrijvers AJ Services for spinal cord injured availability and

satisfaction Spinal Cord 1997 35109-115 doi httpdxdoiorg101038sjsc3100362 PMID9044519

17 Kawu AA et al A cost analysis of conservative management of spinal cord-injured patients in

Nigeria Spinal Cord 2011 491134-1137 doi httpdxdoiorg101038sc201169 PMID2169127818 Peden M et al eds World report on road traffic injury prevention Geneva World Health

Organization 2004

19 OrsquoConnor P Trends in spinal cord injury Accident Analysis and Prevention 2006 3871ndash77 doi

httpdxdoiorg101016jaap200503025 PMID16111641

20 Harries AD et al The HIV-associated tuberculosis epidemicndashwhen will we act Lancet 2010

3751906-1919 doi httpdxdoiorg101016S0140-6736(10)60409-6 PMID20488516

21 Yi Y Lindemann M Colligs A Snowball C Economic burden of neural tube defects and impact of

prevention with folic acid a literature review European Journal of Pediatrics 2011 1701391-1400

doi httpdxdoiorg101007s00431-011-1492-8 PMID21594574

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1416

xii

International Perspectives on Spinal Cord Injury

22 Toriello HV Policy and Practice Guideline Committee of the American College of Medical

Genetics Policy statement on folic acid and neural tube defects Genetics in Medicine 2011

13593-596 doi httpdxdoiorg101097GIM0b013e31821d4188 PMID21552133

23 De-Regil LM Fernaacutendez-Gaxiola AC Dowswell T Pentildea-Rosas JP Effects and safety of pericon-

ceptional folate supplementation for preventing birth defects Cochrane Database of Systematic

Reviews 2010 6CD007950 PMID2092776724 Flour Fortification Initiative FFI Database Atlanta 2012 (httpwwwsphemoryeduwheatflour

globalmapphp accessed 28 May 2012)

25 Williams LJ et al Decline in the prevalence of spina bifida and anencephaly by raceethnicity 1995ndash

2002 Pediatrics 2005 116580-586 doi httpdxdoiorg101542peds2005-0592 PMID16140696

26 Berry RJ Bailey L Mulinare J Bower C Folic Acid Working Group Fortification of flour with folic

acid Food and Nutrition Bulletin 2010 31 SupplS22-S35 PMID20629350

27 Alasfoor D Elsayed MK Mohammed AJ Spina bifida and birth outcome before and after

fortification of flour with iron and folic acid in Oman Eastern Mediterranean Health Journal 2010

16533-538 PMID20799554

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1516

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1616

WHONMHVIP1303

ldquoSpinal cord injury need not be a death sentence But this requires effective

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 to

improved understanding and therefore better practicerdquo

SHUAIB CHALKEN UN SPECIAL RAPPORTEUR ON DISABILITY

ldquoSpina bifida is no obstacle to a full and useful life Irsquove been a Paralympic championa wife a mother a broadcaster and a member of the upper house of the British

Parliament Itrsquos taken grit and dedication but Irsquom 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

benefits I hope that policy-makers everywhere will read this report understand

how to tackle the challenge of spinal cord injury and take the necessary actionsrdquo

TANNI GREY983085THOMPSON PARALYMPIC MEDALLIST AND ME MBER OF UK HOUSE O F LORDS

ldquoDisability 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

lsquogenerouslyrsquo gives what he does not need while solidarity is given between equals

in a horizontal way among human beings who are different but equal in their

rights We need to eliminate the barriers construct a way to liberty the liberty of

being different This is true inclusionrdquo

LENIacuteN MORENO FORMER VICE983085PRESIDENT OF THE REPUBLIC OF ECUADOR

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1416

xii

International Perspectives on Spinal Cord Injury

22 Toriello HV Policy and Practice Guideline Committee of the American College of Medical

Genetics Policy statement on folic acid and neural tube defects Genetics in Medicine 2011

13593-596 doi httpdxdoiorg101097GIM0b013e31821d4188 PMID21552133

23 De-Regil LM Fernaacutendez-Gaxiola AC Dowswell T Pentildea-Rosas JP Effects and safety of pericon-

ceptional folate supplementation for preventing birth defects Cochrane Database of Systematic

Reviews 2010 6CD007950 PMID2092776724 Flour Fortification Initiative FFI Database Atlanta 2012 (httpwwwsphemoryeduwheatflour

globalmapphp accessed 28 May 2012)

25 Williams LJ et al Decline in the prevalence of spina bifida and anencephaly by raceethnicity 1995ndash

2002 Pediatrics 2005 116580-586 doi httpdxdoiorg101542peds2005-0592 PMID16140696

26 Berry RJ Bailey L Mulinare J Bower C Folic Acid Working Group Fortification of flour with folic

acid Food and Nutrition Bulletin 2010 31 SupplS22-S35 PMID20629350

27 Alasfoor D Elsayed MK Mohammed AJ Spina bifida and birth outcome before and after

fortification of flour with iron and folic acid in Oman Eastern Mediterranean Health Journal 2010

16533-538 PMID20799554

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1516

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1616

WHONMHVIP1303

ldquoSpinal cord injury need not be a death sentence But this requires effective

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 to

improved understanding and therefore better practicerdquo

SHUAIB CHALKEN UN SPECIAL RAPPORTEUR ON DISABILITY

ldquoSpina bifida is no obstacle to a full and useful life Irsquove been a Paralympic championa wife a mother a broadcaster and a member of the upper house of the British

Parliament Itrsquos taken grit and dedication but Irsquom 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

benefits I hope that policy-makers everywhere will read this report understand

how to tackle the challenge of spinal cord injury and take the necessary actionsrdquo

TANNI GREY983085THOMPSON PARALYMPIC MEDALLIST AND ME MBER OF UK HOUSE O F LORDS

ldquoDisability 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

lsquogenerouslyrsquo gives what he does not need while solidarity is given between equals

in a horizontal way among human beings who are different but equal in their

rights We need to eliminate the barriers construct a way to liberty the liberty of

being different This is true inclusionrdquo

LENIacuteN MORENO FORMER VICE983085PRESIDENT OF THE REPUBLIC OF ECUADOR

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1516

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1616

WHONMHVIP1303

ldquoSpinal cord injury need not be a death sentence But this requires effective

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 to

improved understanding and therefore better practicerdquo

SHUAIB CHALKEN UN SPECIAL RAPPORTEUR ON DISABILITY

ldquoSpina bifida is no obstacle to a full and useful life Irsquove been a Paralympic championa wife a mother a broadcaster and a member of the upper house of the British

Parliament Itrsquos taken grit and dedication but Irsquom 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

benefits I hope that policy-makers everywhere will read this report understand

how to tackle the challenge of spinal cord injury and take the necessary actionsrdquo

TANNI GREY983085THOMPSON PARALYMPIC MEDALLIST AND ME MBER OF UK HOUSE O F LORDS

ldquoDisability 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

lsquogenerouslyrsquo gives what he does not need while solidarity is given between equals

in a horizontal way among human beings who are different but equal in their

rights We need to eliminate the barriers construct a way to liberty the liberty of

being different This is true inclusionrdquo

LENIacuteN MORENO FORMER VICE983085PRESIDENT OF THE REPUBLIC OF ECUADOR

8172019 Who Nmh Vip 1303 Eng 2

httpslidepdfcomreaderfullwho-nmh-vip-1303-eng-2 1616

WHONMHVIP1303

ldquoSpinal cord injury need not be a death sentence But this requires effective

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 to

improved understanding and therefore better practicerdquo

SHUAIB CHALKEN UN SPECIAL RAPPORTEUR ON DISABILITY

ldquoSpina bifida is no obstacle to a full and useful life Irsquove been a Paralympic championa wife a mother a broadcaster and a member of the upper house of the British

Parliament Itrsquos taken grit and dedication but Irsquom 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

benefits I hope that policy-makers everywhere will read this report understand

how to tackle the challenge of spinal cord injury and take the necessary actionsrdquo

TANNI GREY983085THOMPSON PARALYMPIC MEDALLIST AND ME MBER OF UK HOUSE O F LORDS

ldquoDisability 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

lsquogenerouslyrsquo gives what he does not need while solidarity is given between equals

in a horizontal way among human beings who are different but equal in their

rights We need to eliminate the barriers construct a way to liberty the liberty of

being different This is true inclusionrdquo

LENIacuteN MORENO FORMER VICE983085PRESIDENT OF THE REPUBLIC OF ECUADOR