Spinal Cord Injury Archives

Feb 26

Quality of Life With SCI

By Scire Admin | | No Comments

Author: Kelsey Zhao | Reviewer: Rachel Abel | Published: 26 February 2025 | Updated: ~

Key Points

A good quality of life (QoL) is not uncommon for people with SCI. There is no relationship between injury level or severity and QoL.
Involvement in the community through work, school, volunteer work, and social activities is associated with higher QoL.
Social support from family, friends, peers, and the community is associated with higher QoL.
The frequency of medical complications and how much they interfere with life reduces QoL.
QoL can be impacted by the accessibility of the community, work, and home environments.

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What is quality of life?

A woman on a wheelchair having a conversation with another woman sitting at the table

Quality of life (QoL) measures the different parts of an individual’s life to try and paint a picture of how well they are doing and how satisfied they are with their life. This might include things that an outsider could measure, like housing, income, employment, and health status. This can also include things that are based on an individual’s own values and aspirations, like whether they are satisfied with their current life and whether they feel their wants and needs are fulfilled.

QoL can be difficult to measure since individuals have different values and expectations for life. These values, expectations, and priorities can also change over an individual’s lifetime. Assessments used in research will not always accurately reflect how an individual weights different life components. QoL scores can also be influenced by regional differences in cultural values, access to care, and the accessibility of the surrounding environment.

Does spinal cord injury impact quality of life?

Contrary to popular belief, people with SCI generally have good QoL. On average, people with SCI score lower on QoL tests than the general population. However, a lower average does not mean that all people with SCI see their QoL as low, or that all people with SCI will have a lower score than people who do not have an SCI. In studies of people with cervical SCIs, the majority of participants felt that their QoL is average or better than average.

Most studies find little to no relationship between level of injury, injury severity, and QoL. Rather, higher QoL is limited by the physical and social barriers that prevent people from accessing community, activities, and employment.

What can increase quality of life for people with SCI?

Employment

Numerous studies show that work is strongly related to higher QoL for people with SCI. This is true whether the person is working full-time, part-time, or in an unpaid position.

In a study that looked at the QoL of people with SCI in six different countries, employment was one of the only factors found to be associated with higher QoL regardless of location. One large study also found that satisfaction with life increased over time for people who were employed or students.

Is it hard to find suitable work with SCI?

Differences in age, injury, work experience, and what is defined as work make it hard to pin down an exact number, but research estimates that about 35% of people with SCI are employed. The low rates of employment are likely due to a mix of personal and environmental factors.

Physical and health limitations

After an SCI, job opportunities can be limited by physical impairments and health. For example, someone might not be able to return to the work they did before their injury because it is too physically demanding. Health complications related to SCI like pain and fatigue, and managing care routines can also limit energy and time, making it more difficult to work.

Workplace environment

That said, people with SCI are often underemployed even when they want to and are able to work. Finding suitable work can be difficult because of issues like lack of transportation, inaccessible workplaces, fear of losing financial or health benefits, and employer discrimination towards people with disabilities. This is extremely concerning because of the connection between work and QoL. There is evidence that workplace support and accommodations increase employment for people with physical disabilities.

Local rehabilitation programs or SCI peer programs may have services to help people with SCI reach work and career goals.

Community involvement

One study found that people with SCI felt they had a greater sense of community than the general population. Community involvement can include recreational activities, hobbies, and positions in community organizations and can contribute to a higher QoL.

Social support

Social support refers to one’s relationships with other people, and the interactions, support, and care provided by this network of people, including family members, friends, and peer community. There is consistent evidence that more social support is linked to higher QoL in people with SCI.
Social interaction and participation in social activities are also linked to higher QoL. In some studies, it has the highest positive impact on life satisfaction of all factors. Marriage/having a partner is found to either improve or have no effect on QoL.

Independence

Independence in personal care and transportation is associated with higher QoL. One large study found that life satisfaction increased over the years for people with SCI who lived independently.

Psychological factors

Feeling like you have control over your life was related to higher QoL in several studies. Research has also shown strong associations between symptoms of depression and anxiety and lower quality of life. The connection between QoL and psychological factors highlight the importance of mental health support and treatment in SCI rehabilitation.

What can decrease quality of life for people with SCI?

Health complications

Having an SCI usually comes with additional health complications over one’s lifetime. These conditions can be directly or indirectly related to the SCI and could include:

pain,
urinary tract infections (UTIs),
pressure ulcers,
fatigue,
problematic spasticity,
bowel problems like constipation, hemorrhoids, etc.,
bladder problems like leaking, kidney/bladder stones, etc.,
and mental health conditions like depression, anxiety, and post-traumatic stress disorder.

Read our articles on the areas listed here and many other Topics!

The more health complications disrupt regular life, the greater the impact on QoL. For example, more frequent UTIs are associated with lower QoL as they limit daily activities and increase experiences of spasticity. How much pain interferes with life is also related to QoL. One study found that over a 2-year period, if pain interfered less with life over time, QoL increased, and vice versa. Pain also contributes to higher rates of mental health conditions for people with SCI, which are commonly associated with lower QoL.

Further, the more health conditions one experiences at once, the more QoL decreases. There is some evidence that when there are no health complications, the average QoL for people with SCI is similar to the average QoL of non-SCI populations.

Does accessibility impact quality of life?

Since community involvement and access to services is so important to QoL for people with SCI, access to the community environment can have a big effect on health and QoL. Many of the factors that hinder access can be improved by changing policies, practices, and the physical environment.

Community Access

Although accessibility features are required in many public places, what is accessible for one person may not be for another. The environment outside and inside can still be inaccessible to people with SCI for many reasons. Things like unmaintained sidewalks; physical barriers in parks, beaches, and swimming pools; a lack of adjustable equipment in a health care centre; and obstacles inside and outside of buildings, can prevent people with SCI from participating in the community and accessing health care. This lack of access to community spaces and resources can have a negative impact on QoL.

Housing Access

Not having suitable housing with adaptations for SCI can have a negative impact on QoL. Living in a home that hinders one’s ability to do daily activities or participate in activities can be very stressful. The inaccessible homes of family and friends can also affect QoL.

Read our article on Housing After SCI for more information!

Transportation Access

A lack of accessible transportation can lower QoL by blocking access to community resources, health care, and activities, especially for people in living in rural or remote areas. Owning a private adapted vehicle may be too expensive, not suited to one’s particular needs, or not available in the area. Public transportation like buses and trains are not always available or equipped to accommodate people with SCI.

Read our article on Adapted Driving for more information!

The bottom line

Regardless of injury level and severity, many people with SCI report that they have a good quality of life. QoL can be difficult to measure because everyone has their own priorities, values, and expectations for what they consider to be a good life.

Involvement in the community through work, school, volunteer work, and social activities are some of the factors that are most strongly related to higher QoL. Social support from family, friends, peers, and the community are also important for QoL.

The disruption caused by frequent and problematic medical complications can lower QoL. Seek medical care from a health professional if pain, fatigue, spasticity, bowel/bladder problems etc. are having a big negative impact on your daily life.

For a review of how we assess evidence at SCIRE Community and advice on making decisions, please see SCIRE Community Evidence.

Reference list

Parts of this page have been adapted from the SCIRE Professional “Work and Employment” Module:

Escorpizo R, Smith EM, Finger ME, Miller WC (2018). Work and Employment Following Spinal Cord Injury. In: Eng JJ, Teasell RW, Miller WC, Wolfe DL, Townson AF, Hsieh JTC, Connolly SJ, Noonan VK, Loh E, McIntyre A, Sproule S, Querée M, Benton B editors. Spinal Cord Injury Rehabilitation Evidence. Version 6.0. p 1- 35.
Available from: scireproject.com/evidence/work-and-employment/

Evidence for “What is quality of life?” is based on:

Hammell, K. W. (2004). Exploring quality of life following high spinal cord injury: a review and critique. Spinal Cord, 42(9), 491–502. https://doi.org/10.1038/sj.sc.3101636

Sakakibara, B. M., Hitzig, S. L., Miller, W. C., & Eng, J. J. (2012). An evidence-based review on the influence of aging with a spinal cord injury on subjective quality of life. Spinal Cord, 50(8), 570–578. https://doi.org/10.1038/sc.2012.19

Theofilou, P. (2013). Quality of Life: Definition and Measurement. Europe’s Journal of Psychology, 9(1), 150–162. https://doi.org/10.5964/ejop.v9i1.337

Tate, D., & Forchheimer, M. (2014). Review of Cross-Cultural Issues Related to Quality of Life After Spinal Cord Injury. Topics in Spinal Cord Injury Rehabilitation, 20(3), 181–190. https://doi.org/10.1310/sci2003-181

Evidence for “Does spinal cord injury impact quality of life?” is based on:

Hill, M. R., Noonan, V. K., Sakakibara, B. M., & Miller, W. C. (2010). Quality of life instruments and definitions in individuals with spinal cord injury: a systematic review. Spinal Cord, 48(6), 438–450. https://doi.org/10.1038/sc.2009.164

Hammell, K. W. (2004). Exploring quality of life following high spinal cord injury: a review and critique. Spinal Cord, 42(9), 491–502. https://doi.org/10.1038/sj.sc.3101636

McColl, M. A., Arnold, R., Charlifue, S., Glass, C., Savic, G., & Frankel, H. (2003). Aging, spinal cord injury, and quality of life: structural relationships11No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit on the authors or on any organization with which the authors are associated. Archives of Physical Medicine and Rehabilitation, 84(8), 1137–1144. https://doi.org/10.1016/S0003-9993(03)00138-2

Olkin, R. (2022). Conceptualizing disability: Three models of disability. American Psychological Association. https://www.apa.org/ed/precollege/psychology-teacher-network/introductory-psychology/disability-models

Evidence for “What can increase quality of life for people with SCI?” is based on:

Lakhani, A., Parekh, S., Watling, D. P., Grimbeek, P., Duncan, R., Charlifue, S., & Kendall, E. (2022). Access and engagement with places in the community, and the quality of life among people with spinal cord damage. The Journal of Spinal Cord Medicine, 45(4), 522–530. https://doi.org/10.1080/10790268.2020.1860867

Geyh, S., Ballert, C., Sinnott, A., Charlifue, S., Catz, A., D’Andrea Greve, J. M., & Post, M. W. M. (2013). Quality of life after spinal cord injury: a comparison across six countries. Spinal Cord, 51(4), 322–326. https://doi.org/10.1038/sc.2012.128

Chen, Y., Anderson, C. J., Vogel, L. C., Chlan, K. M., Betz, R. R., & McDonald, C. M. (2008). Change in Life Satisfaction of Adults With Pediatric-Onset Spinal Cord Injury. Archives of Physical Medicine and Rehabilitation, 89(12), 2285–2292. https://doi.org/10.1016/j.apmr.2008.06.008

Nevala, N., Pehkonen, I., Koskela, I., Ruusuvuori, J., & Anttila, H. (2015). Workplace Accommodation Among Persons with Disabilities: A Systematic Review of Its Effectiveness and Barriers or Facilitators. Journal of Occupational Rehabilitation, 25(2), 432–448. https://doi.org/10.1007/s10926-014-9548-z

Ottomanelli, L., & Lind, L. (2009). Review of Critical Factors Related to Employment After Spinal Cord Injury: Implications for Research and Vocational Services. The Journal of Spinal Cord Medicine, 32(5), 503–531. https://doi.org/10.1080/10790268.2009.11754553

Trenaman, L., Miller, W. C., Querée, M., & Escorpizo, R. (2015). Modifiable and non-modifiable factors associated with employment outcomes following spinal cord injury: A systematic review. The Journal of Spinal Cord Medicine, 38(4), 422–431. https://doi.org/10.1179/2045772315Y.0000000031

Migliorini, C. E., New, P. W., & Tonge, B. J. (2011). Quality of life in adults with spinal cord injury living in the community. Spinal Cord, 49(3), 365–370. https://doi.org/10.1038/sc.2010.102

Helgeson, V. S. (2003). Social support and quality of life. Quality of Life Research, 12(1suppl), 25–31. https://doi.org/10.1023/A:1023509117524

Kashif, M., Jones, S., Darain, H., Iram, H., Raqib, A., & Butt, A. A. (2019). Factors influencing the community integration of patients following traumatic spinal cord injury: a systematic review. JPMA. The Journal of the Pakistan Medical Association, 69(9), 1337–1343.

Müller, R., Peter, C., Cieza, A., & Geyh, S. (2012). The role of social support and social skills in people with spinal cord injury—a systematic review of the literature. Spinal Cord, 50(2), 94–106. https://doi.org/10.1038/sc.2011.116

Chang, F.-H., Wang, Y.-H., Jang, Y., & Wang, C.-W. (2012). Factors Associated With Quality of Life Among People With Spinal Cord Injury: Application of the International Classification of Functioning, Disability and Health Model. Archives of Physical Medicine and Rehabilitation, 93(12), 2264–2270. https://doi.org/10.1016/j.apmr.2012.06.008

Jörgensen, S., Iwarsson, S., & Lexell, J. (2017). Secondary Health Conditions, Activity Limitations, and Life Satisfaction in Older Adults With Long‐Term Spinal Cord Injury. PM&R, 9(4), 356–366. https://doi.org/10.1016/j.pmrj.2016.09.004

van Leeuwen, C. M. C., Kraaijeveld, S., Lindeman, E., & Post, M. W. M. (2012). Associations between psychological factors and quality of life ratings in persons with spinal cord injury: a systematic review. Spinal Cord, 50(3), 174–187. https://doi.org/10.1038/sc.2011.120

García-Rudolph, A., Cegarra, B., Opisso, E., Tormos, J. M., & Saurí, J. (2021). Relationships Between Functionality, Depression, and Anxiety With Community Integration and Quality of Life in Chronic Traumatic Spinal Cord Injury. American Journal of Physical Medicine & Rehabilitation, 100(9), 840–850. https://doi.org/10.1097/PHM.0000000000001773

Parker, M. A., Ichikawa, J. K., Bombardier, C. H., & Hammond, F. M. (2022). Association Between Anxiety Symptoms, Depression Symptoms, and Life Satisfaction Among Individuals 1 Year After Spinal Cord Injury: Findings From the SCIRehab Project. Archives of Rehabilitation Research and Clinical Translation, 4(3), 100211. https://doi.org/10.1016/j.arrct.2022.100211

Evidence for “What can decrease quality of life for people with SCI?” is based on:

Andresen, S. R., Biering-Sørensen, F., Hagen, E. M., Nielsen, J. F., Bach, F. W., & Finnerup, N. B. (2016). Pain, spasticity and quality of life in individuals with traumatic spinal cord injury in Denmark. Spinal Cord, 54(11), 973–979. https://doi.org/10.1038/sc.2016.46

Ataoğlu, E., Tiftik, T., Kara, M., Tunç, H., Ersöz, M., & Akkuş, S. (2013). Effects of chronic pain on quality of life and depression in patients with spinal cord injury. Spinal Cord, 51(1), 23–26. https://doi.org/10.1038/sc.2012.51

Kemp, B., Tsukerman, D., Kahan, J., & Adkins, R. (2014). Predicting Psychosocial Outcomes Using a Brief Measure of Quality of Life in a Sample of People with Spinal Cord Injury. Topics in Spinal Cord Injury Rehabilitation, 20(3), 191–196. https://doi.org/10.1310/sci2003-191

Putzke, J. D., Richards, S. J., Hicken, B. L., & DeVivo, M. J. (2002). Interference due to pain following spinal cord injury: important predictors and impact on quality of life. Pain, 100(3), 231–242. https://doi.org/10.1016/S0304-3959(02)00069-6

Vogel, L. C., Krajci, K. A., & Anderson, C. J. (2002). Adults With Pediatric-Onset Spinal Cord Injury: Part 2: Musculoskeletal And Neurological Complications. The Journal of Spinal Cord Medicine, 25(2), 117–123. https://doi.org/10.1080/10790268.2002.11753611

Theisen, K. M., Mann, R., Roth, J. D., Pariser, J. J., Stoffel, J. T., Lenherr, S. M., Myers, J. B., Welk, B., & Elliott, S. P. (2020). Frequency of patient-reported UTIs is associated with poor quality of life after spinal cord injury: a prospective observational study. Spinal Cord, 58(12), 1274–1281. https://doi.org/10.1038/s41393-020-0481-z

Piatt, J. A., Nagata, S., Zahl, M., Li, J., & Rosenbluth, J. P. (2016). Problematic secondary health conditions among adults with spinal cord injury and its impact on social participation and daily life. The Journal of Spinal Cord Medicine, 39(6), 693–698. https://doi.org/10.1080/10790268.2015.1123845

Wijesuriya, N., Tran, Y., Middleton, J., & Craig, A. (2012). Impact of Fatigue on the Health-Related Quality of Life in Persons With Spinal Cord Injury. Archives of Physical Medicine and Rehabilitation, 93(2), 319–324. https://doi.org/10.1016/j.apmr.2011.09.008

Peterson, M. D., Meade, M. A., Lin, P., Kamdar, N., Rodriguez, G., Krause, J. S., & Mahmoudi, E. (2022). Psychological morbidity following spinal cord injury and among those without spinal cord injury: the impact of chronic centralized and neuropathic pain. Spinal Cord, 60(2), 163–169. https://doi.org/10.1038/s41393-021-00731-4

Wollaars, M. M., Post, M. W. M., van Asbeck, F. W. A., & Brand, N. (2007). Spinal Cord Injury Pain: The Influence of Psychologic Factors and Impact on Quality of Life. The Clinical Journal of Pain, 23(5), 383–391. https://doi.org/10.1097/AJP.0b013e31804463e5

Rivers, C. S., Fallah, N., Noonan, V. K., Whitehurst, D. G., Schwartz, C. E., Finkelstein, J. A., Craven, B. C., Ethans, K., O’Connell, C., Truchon, B. C., Ho, C., Linassi, A. G., Short, C., Tsai, E., Drew, B., Ahn, H., Dvorak, M. F., Paquet, J., Fehlings, M. G., & Noreau, L. (2018). Health Conditions: Effect on Function, Health-Related Quality of Life, and Life Satisfaction After Traumatic Spinal Cord Injury. A Prospective Observational Registry Cohort Study. Archives of Physical Medicine and Rehabilitation, 99(3), 443–451. https://doi.org/10.1016/j.apmr.2017.06.012

Burke, D., Lennon, O., & Fullen, B. M. (2018). Quality of life after spinal cord injury: The impact of pain. European Journal of Pain, 22(9), 1662–1672. https://doi.org/10.1002/ejp.1248

Evidence for “How does accessibility impact quality of life?” is based on:

Gurung, S., Jenkins, H.-T., Chaudhury, H., & Ben Mortenson, W. (2023). Modifiable Sociostructural and Environmental Factors That Impact the Health and Quality of Life of People With Spinal Cord Injury: A Scoping Review. Topics in Spinal Cord Injury Rehabilitation, 29(1), 42–53. https://doi.org/10.46292/sci21-00056

Image credits

Two people sitting outside ©SCIRE, CC BY-NC 4.0
Sam Sullivan https://samsullivan.ca/photo-gallery/
Mother in wheelchair with child ©SCIRE, CC BY-NC 4.0
Elderly man in wheelchair cityscape ©SCIRE, CC BY-NC 4.0

Disclaimer: This document does not provide medical advice. This information is provided for educational purposes only. Consult a qualified health professional for further information or specific medical advice. The SCIRE Project, its partners and collaborators disclaim any liability to any party for any loss or damage by errors or omissions in this publication.

Sep 17

Non-traumatic Spinal Cord Injury

By Scire Admin | | No Comments

Author: Dominik Zbogar, Kelsey Zhao | Reviewer: Peter New | Published: 17 September 2024 | Updated: ~

Key Points

NTSCI can be broken down into three major categories: congenital, genetic, and acquired which accounts for the large majority of cases.
Rates of NTSCI vary widely worldwide and much information is lacking. Developed countries tend to have a higher proportion of cases caused by degenerative conditions and tumours. Developing countries tend to have a higher proportion of NTSCI acquired from infection.
Those with NTSCI are more likely to be older, female, have paraplegia and have an incomplete injury when compared to those with traumatic SCI.
Much of NTSCI rehabilitation is similar to traumatic SCI rehabilitation, though the rehabilitation stay is shorter.

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What is non-traumatic SCI?

Spinal cord injuries (SCI) can have traumatic or non-traumatic causes. Traumatic SCIs are caused by external forces in events such as car accidents and falls. Non-traumatic spinal cord injuries (NTSCI) occur without an external physical force and are typically caused by an underlying health condition.

What causes non-traumatic SCI?

Causes of NTSCI can be divided into three major categories: congenital, genetic, and most commonly – acquired.

Congenital (present at birth)

Congenital NTSCIs are developmental defects, malformations, and abnormalities affecting the spinal cord which are present at birth. An infant can have one congenital condition, or multiple conditions at the same time. For example, Type 2 Chiari malformations almost always occurs in association with myelomeningocele, a severe form of spina bifida

Spinal dysraphism

Myelomeningocele is the most severe type of spina bifida as the spinal cord itself protrudes through the opening of the unfused portion of the spinal column.²

Spinal dysraphism is a defect in the development of the neural tube (an early form of the brain and spine) where the canal that houses the spinal cord does not completely close and causes damage to the spinal cord and nerves. A well know type of spinal dysraphism is spina bifida.

Chiari malformations

Chiari malformations are a condition where a part of the brain known as the cerebellum is pushed into the space where the brain connects to the spinal cord.

Skeletal malformations

Skeletal malformations include any deformities or abnormalities in the development of bones or ligaments that affects the spine. These malformations can put the person at higher risk of spine instability which can cause pressure on the spinal cord that can result in NTSCI.

Congenital syringomyelia

Congenital syringomyelia is the formation of a fluid-filled sac, known as a cyst or syrinx, in the spinal cord. This often occurs in association with spina bifida or Chiari malformations, but can also happen on its own, spontaneously.

Genetic

A genetic NTSCI comes from an abnormality in a person’s genes that affects the spinal cord. This abnormaility can be inherited from one’s parents or be a spontaneous mutation that occurred during development. The effects of this genetic abnormality can be present at birth or show up later in life. Most genetic NTSCIs lead to loss of movement and/or sensation from the degeneration of nerve cells.

Some examples of genetic NTSCI types include hereditary spastic paraplegia, spinocerebellar ataxias (e.g. Freidrich’s ataxia), adrenomyeloneuropathies, leukodystrophies, and spinal muscular atrophy.

Acquired

Acquired conditions include the most common causes of NTSCI, such as degenerative spinal cord conditions, tumours, and vascular problems. This is a diverse category and the conditions become more common in older age.

Degenerative

Degenerative NTSCIs include any condition that causes damage to the spinal cord through the degeneration of its bone or ligaments. For example, spondylosis is a condition where there is an abnormal and painful degeneration in the bones and cartilage of the neck that can lead to loss of control or sensation over parts of the body.

Metabolic

Metabolism is the processes in the body that turns food into energy and the components that make up and maintain the body. Nutrient deficiencies like vitamin B12 and folate deficiency, or diseases that affect the maintenance of bone like osteoporosis and Piaget’s disease, can cause degeneration or damage to the spinal cord.

Vascular

Vascular causes of NTSCI refer to spinal cord damage caused by problems with the vessels that carry blood through the body. For example, if a blood vessel bursts and bleeds, if there are issues with abnormal connections between vessels, or if the blood supply is blocked, the spinal cord could be damaged. These issues can happen anywhere in the body and can cause NTSCI when they happen in the spinal cord.

Inflammatory or auto-immune

Inflammatory and auto-immune conditions involve immune system activity that damages the spinal cord through swelling (inflammation) or direct attack on healthy cells (auto-immune). The immune system is normally responsible for protecting us from viruses, bacteria, and other orgamisms but different conditions can cause overactive or innapropriate immune reactions. Examples include transverse myelitis and multiple sclerosis.

Spinal tumors may be (left to right) intramedullary, intradural-extramedullary, or extradural.5

Tumors and masses

Benign or malignant tumours can cause a NTSCI if the growth of the mass puts pressure on the spinal cord or interferes with the blood supply.

Infection

The spinal cord can be infected by bacteria, viruses or other organisms. Infections can put pressure on the spinal cord due to an abcess (pocket of infection) or interfere with the blood supply.

Other

Other uncommon causes of NTSCI include damage to the spinal cord due to radiation exposure and exposure to toxic substances. Amyotrophic lateral sclerosis and primary lateral sclerosis are both rare degenerative diseases that affect the motor neurons which are the nerve cells involved in the control and coordination of movement.

Are Multiple Sclerosis and ALS types of NTSCI?

Multiple sclerosis (MS) is an auto-immune disease where the immune system attacks the protective covering (myelin) of nerve fibers in the central nervous system, which is made up of the brain and spinal cord. Amyotrophic lateral sclerosis (ALS) is a progressive nervous system disease that affects nerve cells in the brain and spinal cord. Because lesions can occur not only in the spinal cord but in the brain too, categorizing them is a challenge. Some studies include MS and ALS with their SCI sample while others choose to exclude these conditions.

Who gets non-traumatic SCI?

TSCI = traumatic spinal cord injury; NTSCI = non-traumatic spinal cord injury

Although NTSCI still affects males more overall, the proportion of females with NTSCI is higher relative to traumatic SCI. NTSCI is also more likely to affect older people.

The numbers by cause

The incidence of NTSCIs varies depending on the cause and the health services in the country where you live. Although there are many gaps in the research data, existing studies provide an idea how different NTSCI causes are distributed.

Congenital & Genetic

In the few studies that recorded cases of congenital causes of NTSCI, spina bifida and other congenital conditions cause between 1 to 6% of cases. Overall, congenital and genetic NTSCI make up a very small proportion of NTSCI.

Acquired

Malignant and benign tumours are common causes of NTSCI globally. Studies from all over the world since 1975 report that tumours are the cause of 14-44% of NTSCI cases
Degenerative conditions of the spine are a very common cause of NTSCI in high-income developed countries. The percentage of NTSCI cases caused by degenerative conditions ranges from 13 to 62%. Many of these conditions become more prevalent with age.
In the regions of Sub-Saharan Africa and South Asia, tuberculosis has been reported to cause 15 to 30 % of NTSCI cases. Tuberculosis is an infectious disease caused by bacteria that typically attacks the lungs but can also damage other parts of the body like the spine and brain.
Other causes of NTSCI commonly reported in research include inflammatory/auto-immune conditions, vascular conditions, and infections.

Pediatric SCI

Traumatic injury is the most common cause of SCI in adults, while non-traumatic causes are more common in children. The most common non-traumatic causes of pediatric SCI include congenital anomalies, spinal cord tumors, infections, and vascular malformations. Common traumatic causes of pediatric SCIs include motor vehicle accidents, falls, sports-related injuries and iatrogenic harm.

Visit SCIRE Professional for more information on Pediatric SCI.

Where in the World?

An estimated 20.6 million individuals live with SCI globally. It appears that the incidence of NTSCI is increasing due to the ageing population in many countries. Indeed, in some countries the incidence of NTSCI is now higher than that of traumatic SCI.

There is a general lack of information about incidence and types of NTSCI worldwide. That said, developed countries tend to have a higher proportion of cases caused by degenerative conditions (32%) and from tumours (25%) in Western Europe. Developing countries, in comparison, tend to have a higher proportion of NTSCI acquired from infection, particularly tuberculosis and HIV, though tumours are also reported as a major cause. There are many gaps in tracking the global rates of NTSCI.

How does non-traumatic SCI present?

The onset of NTSCI may be slow and gradual and be related to a progressive condition or a complication from another medical event. Onset can range from minutes to months depending on the cause of injury.

Compared to traumatic SCI, those with NTSCI:

TSCI = traumatic spinal cord injury; NTSCI = non-traumatic spinal cord injury

are more likely to have paraplegia
are more likely to have an incomplete injury
spend less time in rehabilitation and have reduced hospital charges
have similar discharge destinations.

“Invisible” disability

Compared to people with traumatic SCI, people with NTSCI are more likely to have regained some walking ability when they are discharged from rehabilitation. People with SCI who can walk may face unique physical and psychosocial challenges. The use of mobility devices for walking likes canes and walkers might cause more fatigue and/or pain then a wheelchair. The absence of a wheelchair as a clear indicator of disability can result in misunderstanding and judgement from others due to lack of awareness about people with SCI who can walk. Some feel that they exist in a “grey zone” where they are neither fully abled nor disabled and experience “invisible” challenges.

Some examples of challenges include:

Misunderstanding from others about the severity of their injury and the impairments they live with.
Feeling out of place in SCI programs or in the SCI community, especially when the program or space is not built with people who can walk in mind (e.g., no places to sit).
Unwanted attention and scrutiny when in public or in social situations due to an abnormal gait or assistive devices.
Lack of empathy from others when they pass as not disabled (e.g., “Can you hurry up? Why are you so slow?”).

There is a need for more programs and services that are welcoming to and consider the needs of people with SCI who can walk. If you or someone you know is struggling with finding community and services as a person with SCI who can walk, it can be helpful to talk to health professionals or peers with similar injuries and experiences. Peer support has been proven to improve adjustment to life after injury and general wellbeing through social/emotional support and sharing knowledge. If pain or fatigue with walking are a problem, it may also be beneficial to consider the intermittent use of wheeled mobility devices.

Read our article on SCI Basics for more information about types of SCI!

How is non-traumatic SCI treated?

Rehabilitation common to all types of SCI

Most of the rehabilitation process will be similar between traumatic and NTSCI while treatment of the underlying conditions that cause NTSCI will vary. Rehabilitation common to both traumatic SCI and NTSCI includes:

Education about the SCI and the related medical problems that need to be managed.
Complication management and prevention: In people with all types of SCI, complications like urinary tract infection, pneumonia, pressure ulcers, spasticity and neuropathic pain are common and managed in rehabilitation. Prevention and education are essential to minimize complications.
Physical and occupational therapy: Physical therapists work with patients to regain mobility, strength, and coordination. Occupational therapists focus on helping patients adapt to their new circumstances, relearn daily living skills, and regain independence. Both are critical essential to rehabilitation after SCI.
Assistive devices: Mobility aids, adaptive equipment, assistive technologies, and other supports like cushions and mattresses can significantly improve the quality of life for people with SCIs. These devices help with mobility, communication, daily tasks, and prevent complications like pressure ulcers.
Pain management: Chronic pain is a common issue in that can be managed with medications, nerve blocks, or other interventions to alleviate discomfort.
Bladder and bowel training: Medical treatments can be used to treat bladder and bowel problems. Training also includes learning how to manage your bladder and bowel care after rehabilitation.
Psychological support: Psychological support and counseling can help individuals and their families navigate the challenging emotional aspects of coping with SCI.
Community reintegration: In preparation for leaving rehabilitation, the health team should provide support in finding local resources and services, managing finances, returning to regular life activities, and adapting the home for SCI.

Read our article on Understanding Rehabilitation for more information!

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Rehabilitation unique to non-traumatic SCI

Predicting recovery

NTSCI presents unique rehabilitation challenges. Given that those with NTSCI tend to be older, there is an increased likelihood of chronic conditions such as arthritis, diabetes, cardiovascular disease, obesity, and other conditions. These comorbidities can negatively impact rehabilitation and recovery.

Predicting rehabilitation outcomes after injury is particularly difficult in those with a progressive NTSCI, where the condition underlying the SCI leads to a deterioration over time compared to those with a non-progressive cause of NTSCI. The cause of NTSCI is an important predictor of outcomes, length of stay, and survival.

Considering the older age of many people with NTSCI, the various possible chronic health conditions that they may have, and that many NTSCI are incomplete, it can be very hard to predict the recovery from NTSCI. Making comparisons with traumatic SCI is also very hard for the same reasons.

Access to rehabilitation services

People with NTSCI have improved recovery outcomes when they are treated in a spinal-specific rehabilitation unit rather than in general rehabilitation. Clinicians agree that that a spinal rehabilitation unit that specializes in NTSCI is the ideal setting for treatment. However, there is a tendency for spinal rehabilitation units to give preference to traumatic SCI when admitting clients as NTSCI is considered less urgent and they may exclude older patients or those with metastatic cancer presumably referring them to gerontology and oncology units, respectively.

Concurrent treatment

Depending on the cause of the NTSCI, some people will undergo treatments for the underlying condition at the same time as rehabilitation. This could include surgeries, radiation therapy and chemotherapy for tumours, immunosuppressant medications for auto-immune conditions, antibiotics for bacterial infections, etc. The rehabilitation unit needs to be aware of these treatments for safety and to optimally plan treatments and rehabilitation therapy. Some treatments for underlying conditions can be draining and negatively impact rehabilitation if therapy is scheduled soon after.

Diagnosis of underlying cause

There is also a possibility for people with NTSCI to be admitted to rehabilitation without a diagnosis or with an incorrect diagnosis of the underlying condition. In these situations, rehabilitation clinicians and therapists may end up being involved in determining the correct diagnosis.