Factsheet: Spinal cord injury
Key Facts
- Every year, around the world, between 250 000 and 500 000 people suffer a spinal cord injury (SCI).
- The majority of spinal cord injuries are due to preventable causes such as road traffic crashes, falls or violence.
- People with a spinal cord injury are two to five times more likely to die prematurely than people without a spinal cord injury, with worse survival rates in low- and middle-income countries.
- Spinal cord injury is associated with lower rates of school enrollment and economic participation, and it carries substantial individual and societal costs.
Factsheet: Disability and health
Key Facts
- Over a billion people, about 15% of the world's population, have some form of disability.
- Between 110 million and 190 million adults have significant difficulties in functioning.
- Rates of disability are increasing due to population ageing and increases in chronic health conditions, among other causes.
- People with disabilities have less access to health care services and therefore experience unmet health care needs.
The term ‘spinal cord injury’ refers to damage to the spinal cord resulting from trauma (e.g. a car crash) or from disease or degeneration (e.g. cancer). There is no reliable estimate of global prevalence, but estimated annual global incidence is 40 to 80 cases per million population. Up to 90% of these cases are due to traumatic causes, though the proportion of non-traumatic spinal cord injury appears to be growing.
Symptoms of spinal cord injury depend on the severity of injury and its location on the spinal cord. Symptoms may include partial or complete loss of sensory function or motor control of arms, legs and/or body. The most severe spinal cord injury affects the systems that regulate bowel or bladder control, breathing, heart rate and blood pressure. Most people with spinal cord injury experience chronic pain.
Males are most at risk in young adulthood (20-29 years) and older age (70+). Females are most at risk in adolescence (15-19) and older age (60+). Studies report male-to-female ratios of at least 2:1 among adults, sometimes much higher.
Mortality risk is highest in the first year after injury and remains high compared to the general population. People with spinal cord injury are 2 to 5 times more likely to die prematurely than people without SCI.
Mortality risk increases with injury level and severity and is strongly influenced by availability of timely, quality medical care. Transfer method to hospital after injury and time to hospital admission are important factors.
Preventable secondary conditions (e.g. infections from untreated pressure ulcers) are no longer among the leading causes of death of people with spinal cord injury in high-income countries, but these conditions remain the main causes of death of people with spinal cord injury in low-income countries.
Spinal cord injury is associated with a risk of developing secondary conditions that can be debilitating and even life-threatening—e.g. deep vein thrombosis, urinary tract infections, muscle spasms, osteoporosis, pressure ulcers, chronic pain, and respiratory complications. Acute care, rehabilitation services and ongoing health maintenance are essential for prevention and management of these conditions.
Spinal cord injury may render a person dependent on caregivers. Assistive technology is often required to facilitate mobility, communication, self-care or domestic activities. An estimated 20-30% of people with spinal cord injury show clinically significant signs of depression, which in turn has a negative impact on improvements in functioning and overall health.
Misconceptions, negative attitudes and physical barriers to basic mobility result in the exclusion of many people from full participation in society. Children with spinal cord injury are less likely than their peers to start school, and once enrolled, less likely to advance. Adults with spinal cord injury face similar barriers to economic participation, with a global unemployment rate of more than 60%.
Existing data do not allow for global cost estimates of spinal cord injury, but they do offer a general picture.
- The level and severity of the injury have an important influence on costs--injuries higher up on the spinal cord (e.g. tetraplegia vs. paraplegia) incur higher costs.
- Direct costs are highest in the first year after spinal cord injury onset and then decrease significantly over time.
- Indirect costs, in particular lost earnings, often exceed direct costs.
- Much of the cost is borne by people with spinal cord injury.
- Costs of spinal cord injury are higher than those of comparable conditions such as dementia, multiple sclerosis and cerebral palsy.
The leading causes of spinal cord injury are road traffic crashes, falls and violence (including attempted suicide). A significant proportion of traumatic spinal cord injury is due to work or sports-related injuries. Effective interventions are available to prevent several of the main causes of spinal cord injury, including improvements in roads, vehicles and people’s behaviour on the roads to avoid road traffic crashes, window guards to prevent falls, and policies to thwart the harmful use of alcohol and access to firearms to reduce violence.
Many of the consequences associated with spinal cord injury do not result from the condition itself, but from inadequate medical care and rehabilitation services, and from barriers in the physical, social and policy environments.
Implementation of the UN Convention on the Rights of Persons with Disabilities (CRPD) requires action to address these gaps and barriers.
Essential measures for improving the survival, health and participation of people with spinal cord injury include the following.
- Timely, appropriate pre-hospital management: quick recognition of suspected spinal cord injury, rapid evaluation and initiation of injury management, including immobilization of the spine.
- Acute care (including surgical intervention) appropriate to the type and severity of injury, degree of instability, presence of neural compression, and in accordance with the wishes of the patient and their family.
- Access to ongoing health care, health education and products (e.g. catheters) to reduce risk of secondary conditions and improve quality of life.
- Access to skilled rehabilitation and mental health services to maximize functioning, independence, overall wellbeing and community integration. Management of bladder and bowel function is of primary importance.
- Access to appropriate assistive devices that can enable people to perform everyday activities they would not otherwise be able to undertake, reducing functional limitations and dependency. Only 5-15% of people in low- and middle-income countries have access to the assistive devices they need.
- Specialized knowledge and skills among providers of medical care and rehabilitation services.
Essential measures to secure the right to education and economic participation include legislation, policy and programmes that promote the following:
- physically accessible homes, schools, workplaces, hospitals and transportation;
- inclusive education;
- elimination of discrimination in employment and educational settings;
- Vocational rehabilitation to optimize the chance of employment;
- micro-finance and other forms of self-employment benefits to support alternative forms of economic self-sufficiency;
- access to social support payments that do not act as disincentive to return to work; and
- correct understanding of spinal cord injury and positive attitudes towards people living with it.
WHO works across the spectrum from primary prevention of traumatic and non-traumatic causes of spinal cord injury, improvements in trauma care, strengthening health and rehabilitation services, and support for inclusion of people with spinal cord injuries. WHO:
- works in a multisectoral manner, in partnership with national stakeholders from a variety of sectors (e.g. health, police, transport, education) to improve prevention of spinal cord injury including of road traffic injuries, falls , violence and neural tube defects;
- guides and supports Member States to increase awareness of disability issues, and promotes the inclusion of disability as a component in national health policies and programmes;
- facilitates data collection and dissemination of disability-related data and information;
- develops normative tools, including guidelines and good practice examples to strengthen primary prevention (road traffic crashes, falls and violence), trauma care, health care, rehabilitation and support and assistance;
- builds capacity among health policy-makers and service providers;
- promotes scaling up of community-based rehabilitation; and
- promotes strategies to ensure that people with disabilities are knowledgeable about their own health conditions, and that health-care personnel support and protect the rights and dignity of persons with disabilities.
The International Classification of Functioning, Disability and Health (ICF) defines disability as an umbrella term for impairments, activity limitations and participation restrictions. Disability is the interaction between individuals with a health condition (e.g. cerebral palsy, Down syndrome and depression) and personal and environmental factors (e.g. negative attitudes, inaccessible transportation and public buildings, and limited social supports).
Over a billion people are estimated to live with some form of disability. This corresponds to about 15% of the world's population. Between 110 million (2.2%) and 190 million (3.8%) people 15 years and older have significant difficulties in functioning. Furthermore, the rates of disability are increasing in part due to ageing populations and an increase in chronic health conditions.
Disability is extremely diverse. While some health conditions associated with disability result in poor health and extensive health care needs, others do not. However all people with disabilities have the same general health care needs as everyone else, and therefore need access to mainstream health care services. Article 25 of the UN Convention on the Rights of Persons with Disabilities (CRPD) reinforces the right of persons with disabilities to attain the highest standard of health care, without discrimination.
People with disabilities report seeking more health care than people without disabilities and have greater unmet needs. For example, a recent survey of people with serious mental disorders, showed that between 35% and 50% of people in developed countries, and between 76% and 85% in developing countries, received no treatment in the year prior to the study.
Health promotion and prevention activities seldom target people with disabilities. For example women with disabilities receive less screening for breast and cervical cancer than women without disabilities. People with intellectual impairments and diabetes are less likely to have their weight checked. Adolescents and adults with disabilities are more likely to be excluded from sex education programmes.
People with disabilities are particularly vulnerable to deficiencies in health care services. Depending on the group and setting, persons with disabilities may experience greater vulnerability to secondary conditions, co-morbid conditions, age-related conditions, engaging in health risk behaviors and higher rates of premature death.
Secondary conditions
Secondary conditions occur in addition to (and are related to) a primary health condition, and are both predictable and therefore preventable. Examples include pressure ulcers, urinary tract infections, osteoporosis and pain.
Co-morbid conditions
Co-morbid conditions occur in addition to (and are unrelated to) a primary health condition associated with disability. For example the prevalence of diabetes in people with schizophrenia is around 15% compared to a rate of 2-3% for the general population.
Age-related conditions
The ageing process for some groups of people with disabilities begins earlier than usual. For example some people with developmental disabilities show signs of premature ageing in their 40s and 50s.
Engaging in health risk behaviours
Some studies have indicated that people with disabilities have higher rates of risky behaviours such as smoking, poor diet and physical inactivity.
Higher rates of premature death
Mortality rates for people with disabilities vary depending on the health condition. However an investigation in the United Kingdom found that people with mental health disorders and intellectual impairments had a lower life expectancy.
People with disabilities encounter a range of barriers when they attempt to access health care including the following.
Prohibitive costs
Affordability of health services and transportation are two main reasons why people with disabilities do not receive needed health care in low-income countries - 32-33% of non-disabled people are unable to afford health care compared to 51-53% of people with disabilities.
Limited availability of services
The lack of appropriate services for people with disabilities is a significant barrier to health care. For example, research in Uttar Pradesh and Tamil Nadu states of India found that after the cost, the lack of services in the area was the second most significant barrier to using health facilities.
Physical barriers
Uneven access to buildings (hospitals, health centres), inaccessible medical equipment, poor signage, narrow doorways, internal steps, inadequate bathroom facilities, and inaccessible parking areas create barriers to health care facilities. For example, women with mobility difficulties are often unable to access breast and cervical cancer screening because examination tables are not height-adjustable and mammography equipment only accommodates women who are able to stand.
Inadequate skills and knowledge of health workers
People with disabilities were more than twice as likely to report finding health care provider skills inadequate to meet their needs, four times more likely to report being treated badly and nearly three times more likely to report being denied care.
Addressing barriers to health care
Governments can improve health outcomes for people with disabilities by improving access to quality, affordable health care services, which make the best use of available resources. As several factors interact to inhibit access to health care, reforms in all the interacting components of the health care system are required.
Policy and legislation
Assess existing policies and services, identify priorities to reduce health inequalities and plan improvements for access and inclusion. Make changes to comply with the CRPD. Establish health care standards related to care of persons with disabilities with enforcement mechanisms.
Financing
Where private health insurance dominates health care financing, ensure that people with disabilities are covered and consider measures to make the premiums affordable. Ensure that people with disabilities benefit equally from public health care programmes. Use financial incentives to encourage health-care providers to make services accessible and provide comprehensive assessments, treatment, and follow-ups. Consider options for reducing or removing out-of-pocket payments for people with disabilities who do not have other means of financing health care services.
Service delivery
Provide a broad range of modifications and adjustments (reasonable accommodation) to facilitate access to health care services. For example changing the physical layout of clinics to provide access for people with mobility difficulties or communicating health information in accessible formats such as Braille. Empower people with disabilities to maximize their health by providing information, training, and peer support. Promote community-based rehabilitation (CBR) to facilitate access for disabled people to existing services. Identify groups that require alternative service delivery models, for example, targeted services or care coordination to improve access to health care.
Human resources
Integrate disability education into undergraduate and continuing education for all health-care professionals. Train community workers so that they can play a role in preventive health care services. Provide evidence-based guidelines for assessment and treatment.
Data and research
Include people with disabilities in health care surveillance. Conduct more research on the needs, barriers, and health outcomes for people with disabilities.
In order to improve access to health services for people with disabilities, WHO:
- guides and supports Member States to increase awareness of disability issues, and promotes the inclusion of disability as a component in national health policies and programmes;
- facilitates data collection and dissemination of disability-related data and information;
- develops normative tools, including guidelines to strengthen health care;
- builds capacity among health policy-makers and service providers;
- promotes scaling up of CBR;
- promotes strategies to ensure that people with disabilities are knowledgeable about their own health conditions, and that health-care personnel support and protect the rights and dignity of persons with disabilities.