Spinal cord injury rehabilitation is one of the least known dramatic successes associated with rehabilitation. It vividly illustrates the central premise of the General Theory of Rehabilitation, that rehabilitation’s role is to facilitate a person’s adaptation. Ironically, in comparison to another great success for rehabilitation, Stroke Unit care and stroke rehabilitation, there is no direct trial evidence. Indeed, research into spinal cord rehabilitation is relatively limited compared to the enormous efforts and resources devoted to overcoming the injury to the spinal cord itself. Spinal cord injury services generally developed separately from other rehabilitation services, and many remain relatively isolated. In the UK, about one-third of people with spinal cord injuries are now managed in general rehabilitation services. Moreover, patients with non-traumatic conditions present with similar or identical problems yet are not usually seen within specialist spinal cord injury services. Consequently, all rehabilitation experts must understand spinal cord injury rehabilitation.
F-32 Spinal Cord Injury rehabilitation
Table of Contents
Spinal cord injury competency,
The rehabilitation expert must be “Able to assess patient’s condition and rehabilitation needs, to give advice, and to take rehabilitation responsibility for any patient with a spinal cord injury from the onset into the long-term.” In addition, they should “Also demonstrate sound understanding of pelvic dysfunction following spinal cord injury.” The behavioural indicators of competence, knowledge, skills associated with this competence and some relevant references are set out in a document for download.
Introduction
“In the spring of 1944, I was called to group headquarters for an interview with the group officer, a surgeon of formidable character. ‘Allen,’ he said to me, ‘I am sorry to have to inflict this on you, but we have been ordered to open a spinal unit at Leatherhead Hospital, and I want you to take charge of it. Of course, as you know, they are hopeless cases—most of them die, but you must do your best for them.’ With these words of ‘encouragement,’ I returned home sadly.” William Donovan quoted this memo in his review, Spinal Cord Injury - Past, Present, and Future. In 1954, this was untrue, and by 1964, it was an unthinkable statement.
In the UK, Ludwig Guttmann developed the crucial features of successful rehabilitation after spinal cord injury and in 2005, JR Silver listed them:
- Specialised spinal units
- Immediate treatment by the appropriate specialist
- Supervision of patients immediately after injury
- Not to leave the patient alone in the reconditioning period
- Continuous treatment
- Late supervision and aftercare
- Thorough documentation
- Availability of public health service
- vocational Rehabilitation with the cooperation of health services with the Ministry of Pensions (now the Department of Work and Pensions) and employer.
More recent evidence from research into rehabilitation after stroke and other acute-onset disorders suggests an alternative set of characteristics:
- Immediate involvement on a multiprofessional rehabilitation team with expertise in spinal cord injury rehabilitation (but not necessarily exclusively so)
- Regular team meetings to undertake rehabilitation planning, including setting goals
- Rehabilitation intervention tailored to the person’s needs and preferences, including
- Exercise, practice, education in self-management, psychosocial interventions, and a significant input into environmental adaptations
- Involvement and education of family members and friends
- Ongoing professional education and development of all team members
This competency covers the expertise needed by team members.
Evidence on spinal cord injury rehabilitation
No interventions significantly influence spinal cord injury. When the injury is incomplete, there is potential residual function; after any acute-onset neurological condition, this may recover and improve to an extent. When the injury is complete, neurological function does not change.
Thus, one of the difficulties interpreting studies on people with spinal cord injury is to know whether the study population includes both people with complete and incomplete injuries. If mixed, have the two groups been included in the analyses, or are they analysed separately?
For example, a systematic review of the ‘effectiveness of rehabilitation protocols’ (which meant technologically-based treatments) reviewed 17 studies published between 2012 and 2023. Some of the studies specified the nature of the spinal injury. The review itself did not clarify the distinction. At most, it said, “In cases of incomplete injury, it is critical to enhance physical activity and to return to regular activities; hence, gait training is deemed critical.” While acknowledging a potential difference, the authors did not draw any conclusions about differential effectiveness in patients with complete or incomplete injury.
The UK National Institute for Health and Care Excellence (NICE) published a systematic review of evidence on ‘Specific programmes and packages in spinal cord injury for people with complex rehabilitation needs after traumatic injury.’ This is a massive work and a challenging read (310 pages), but it does provide a recent and comprehensive list of relevant evidence.
The evidence garnered was used within a NICE guideline on rehabilitation after trauma (NG211), where there is a section (1.15) on ‘Rehabilitation after spinal cord injury’. This section makes 37 specific recommendations covering:
- Referral, assessment, and general principles
- Bladder and bowel function
- Respiratory function, swallowing, and speech
- Prevention of complications
- Maintaining mobility and movement
- Low mood and psychological support.
There is a significant difference between the specialist spinal cord injury services concerning bed rest in the UK. Many centres undertake early mobilisation, getting patients out of bed and starting procedures such as standing on a tilt table as soon as feasible. Still, some centres recommend many weeks of strict rest in bed. The UK ‘Standards for Specialist Rehabilitation of Spinal Cord Injury’ wrote, in section 2.13 on initial mobilisation, “The time to mobilisation following a spinal cord injury is an area of controversy that has led to different management plans and advice across the eight SCI centres in England. The majority of centres advise to mobilise as soon as medically stable and when spinal stability has been achieved surgically or can be maintained through orthoses.” NICE has recommended research into the issue.
Chiara Arienti and colleagues recently undertook an overview of Systematic Reviews published in the Cochrane Library. Only three reviews were published. They included 64 primary studies and 2024 patients, and no certain conclusions about any specific intervention studied could be drawn. The abstract phrased this, “Rehabilitation interventions might improve respiratory outcomes and pain relief in people with SCI. There is uncertainty whether bodyweight-supported treadmill training, robotic-assisted training, and functional electrostimulation affect walking speed and capacity.”
Skincare
The success of spinal cord injury rehabilitation can be attributed to almost obsessive attention to preventing complications; before 1935, ‘complications’ were considered inevitable and caused most early deaths. Skin pressure ulceration was and remains perhaps the highest priority preventative goal.
Suzanne Groah and colleagues reported a systematic review of studies on skin pressure ulceration and its prevention. Forty-nine studies were included: 25 on skin pressure while sitting, 18 on skin pressure while lying, and six on repositioning. Only one randomised study was found, a four-group cluster randomised trial involving 761 people in care homes.
They concluded that:
- Lying on the side increased the risk of ulceration due to high pressure over the hip trochanter,
- Shear forces were a significant cause of skin damage when changing position,
- No definitive guidance about positioning or repositioning could be given.
Consequently, their primary message was that skin pressure ulceration “risk is highly individualized, with the SCI population at a higher risk, which demands flexible PU prevention strategies for bed/seated positioning and pressure relief manoeuvres. Education has and will remain our most powerful ally to thwart this pervasive public health problem.”
A report from Fatma Eren and colleagues supports this conclusion. They surveyed 86 people living at home after a spinal cord injury, asking about the frequency of turning in bed overnight. The local recommendation was to turn every two hours. Their survey found that 40% of people were not turned overnight, and only 25% adhered to the recommended frequency.
They conclude their finding is “a call to practitioners to best determine the most appropriate turning frequency that can meet compliance of the individual with SCI, as well as maintain skin protection in the chronic period after injury.” In other words, as in all areas of rehabilitation, we must:
- Be person-centred, always considering the patient’s perspective and wishes
- Tailor all interventions and recommendations,
- Educate the patient and their carers to enable successful self-management
Psychosocial aspects of SCI rehabilitation.
In 2022, Maggi Budd and colleagues published an interesting narrative review of the psychosocial consequences of spinal cord injury, including an excellent Venn diagram with a biopsychosocial analysis (Figure 1 in their article). They make the vital point that spinal cord injury is “a permanent condition requiring lifelong, daily adaptations for both the person with SCI and those caring for them.” The General Theory of Rehabilitation emphasises the central role of adaptation; this review highlights it is a life-long process.
The review covers eleven areas of psychosocial consequence, summarised in Figure 2 at the end of their review. I will mention two essential points.
Although the natural reaction of people without spinal cord injury is to focus on the evident losses and limitations imposed, the review notes that psychopathology is not inevitable. Indeed, stress-related growth, benefit finding, and post-traumatic growth occur for many people after spinal cord injury. Moreover, it also happens for family members and caregivers. This positive outcome may arise from success in adapting to the new reality, demonstrating the importance of rehabilitation in facilitating adaptation.
Nonetheless, some people may react with so-called maladaptive behaviours, such as wilfully not adhering to recommendations such as avoiding skin damage or, more explicitly, considering and enacting self-harm and suicide. The rehabilitation team needs to investigate the reasons. They often include anger and problems in accepting the loss of control over many aspects of their life. Countering harmful behaviour is difficult; efforts to understand the person’s perspective and reasoning may help.
Marcel Post and CMC van Leeuwen also reviewed psychosocial issues in spinal cord injury. Their focus was on subjective well-being, a crucial component of quality of life. They were interested in epidemiology and natural history and remarked that better and more extensive cohort studies with prolonged follow-up are still needed. The primary and unsurprising message of rehabilitation was that psychological and social support factors strongly influence subjective well-being.
Rehabilitation after spinal cord injury must pay attention to how the person can establish social networks and relationships in their community.
Pain and urinary tract infection.
Pain has a considerable effect on quality of life. Pain is frequent after spinal cord injury. Swati Mehta and colleagues reviewed pharmacologic treatments for pain after spinal cord injury. They point out that the actual prevalence of pain in the whole population of patients with spinal cord injury is unknown, with an estimation of between 25% and 96%.
In summary:
- Analgesics drugs such as oxycodone reduced pain in the short term but did not improve quality of life
- Anti-convulsant drugs were commonly investigated; pregabalin was generally effective and had the most evidence
- Anti-depressants had some effects, with venlafaxine showing benefit in a large study
- Anti-spastic drugs and cannabinoids had insufficient evidence to conclude.
Urinary tract infections are challenging. Bladder control is usually absent, and indwelling catheters are frequently used. Consequently, urinary tract infections are common. However, Establishing whether someone has a significant urinary tract infection worth treating is not straightforward.
Felicia Skelton and colleagues investigated the value of routine urine testing at an annual review. Their findings urge caution. Two-thirds (171) of 327 urine cultures were positive, but only 22 (13%) had urinary tract infections. The remaining 87% were asymptomatic bacteriuria. However, 53 (36%) of the 149 cases of asymptomatic bacteriuria were treated with antibiotics.
Margaret Fitzpatrick and colleagues retrospectively reviewed 300 encounters (in 291 patients) in people with chronic neurological conditions given a diagnosis of urinary tract infection (200) or asymptomatic bacteriuria (100). There were 118 patients with spinal cord injuries. Ninety-eight of the 100 people with asymptomatic bacteriuria were correctly diagnosed. Of the infected people, 130 were correctly diagnosed; 25 had no positive culture. Fifty-five (22%) had asymptomatic bacteriuria, and 15 had no positive culture but were incorrectly diagnosed. Antibiotic treatment was often inappropriate.
These findings seriously question the value of routine urinary screening for infection. I am unaware of evidence supporting a regular annual review rather than an open-access review when requested. In other chronic illnesses, the open-access approach is more effective.
Conclusion
The rehabilitation of people after spinal cord injury draws on most rehabilitation skills. Many of the individual interventions lack evidence, but there is no question that spinal cord injury rehabilitation is spectacularly successful. Future research should identify how to optimise some of the interventions currently done “because that is what we do”, such as annual reviews, recommending turning in bed every two hours, recommending bed rest for many weeks in the early phases, or using anti-spasticity drugs long-term. In other words, we need to explore how to personalise the routines that work. Research into basic neurobiology is required, but one must temper hope with realism and avoid engendering unrealistic expectations, and more research resources should go towards improving what we have.
