Acquired Brain Injury rehabilitation
I have agreed to talk, on 6 December 2024, to medical trainees about Acquired Brain Injury rehabilitation. I decided to write a post to help me set out six principles, but as I wrote this post, I realised there was a gaping hole around the term: acquired brain injury, sometimes abbreviated to ABI. It needs to be made clear what is included or excluded. For example, multiple sclerosis is usually acquired after age 21, but it is not necessarily considered an acquired brain injury. Moreover, a person left with difficulties after the neurosurgical removal of a meningioma or partial removal of a glioma will often be excluded. I will discuss these issues. The next challenge was why acquired brain injury is considered a helpful grouping. Why should acute onset neurological loss be considered separate from, for example, acute spinal cord injury or most trauma, including facial injury from burns? Is this a hangover from how rehabilitation evolved from a biomedical approach to service delivery? When I finished writing this, I realised it reinforced ideas I had already explored in other posts and pages on this site.
Table of Contents
Introduction
The term acquired brain injury is widely used to describe a group of patients. It is a category, a classification. Thus, systematic reviews are interested in rehabilitation after acquired brain injury; indeed, I am a co-author of a Cochrane review. The term is also used to describe clinical services. Unfortunately, it is an imprecise term, which has consequences for patients, clinicians, researchers, and people commissioning or looking for services.
The first question must be: What is the value of identifying a group of patients? For example, does it lead to better organised, more effective, and efficient services? It could be that people with brain injury differ in unique and significant ways from all other patients undergoing rehabilitation, and they need a completely different service. Spinal cord injury services are separated on this basis.
There is a charity based on this category, the UK Acquired Brain Injury Forum (UKABIF), whose mission is “To promote better understanding of all aspects of acquired brain injury.” Unfortunately, it does not define the condition, though the evident assumption is that it has a sudden onset. The All-Party Parliamentary Group’s report describes it thus: “Acquired Brain Injury (ABI) is a leading cause of death and disability in the United Kingdom (UK). It is a chronic condition with ‘hidden’ disabilities and life-long consequences.”
The report’s description is not helpful. This post will explore the practical and clinical aspects of classifying patients into or out of the Acquired Brain Injury category, almost universally abbreviated to ABI, to determine its validity and utility and consider whether it is sufficiently different to require named services.
What is an Acquired Brain Injury?
I have already given one definition above, and the ambiguity about the term’s meaning is well illustrated by reviewing some more published definitions:
- UK Department of Health and Social Care, 2022
An acquired brain injury is defined as a non-degenerative injury to the brain occurring since birth. - Cochrane systematic review on music therapy for people with acquired brain injury
brain damage through accident or illness, including stroke, that is unlikely to degenerate further - Brain Injury Association of America (17-Nov-2024)
An acquired brain injury (ABI) is an injury to the brain that is not hereditary, congenital, degenerative, or induced by birth trauma. - Victoria State Government, Department of Health, Australia (17-Nov-2024)
Acquired brain injury refers to any type of brain damage that happens after birth. Causes of ABI include disease, blows to the head, alcohol and drug use, or oxygen deprivation. Coping with the consequences of acquired brain injury can be difficult for everyone, including family members. - Wikipedia (17-Nov-2024)
Acquired brain injury (ABI) is brain damage caused by events after birth, rather than as part of a genetic or congenital disorder such as fetal alcohol syndrome, perinatal illness or perinatal hypoxia.
Some definitions encompass any brain injury that manifests after birth, but others state or imply only acute onset conditions are included. One defines it by exclusion – “not hereditary, congenital, degenerative, or induced by birth trauma” – but this raises more issues. For example, is multiple sclerosis degenerative? Moreover, people with stroke and some people with traumatic brain injury start declining within a few years of trauma; are they degenerative?
In practice, when used to select papers for review or patients for a service or research trial, it refers to acute onset brain injury with no expectation of further damage, often just encompassing stroke and traumatic brain injury.
The category of acquired brain injury is too ill-defined to be helpful. The logical interpretation leads to all brain disorders being included if one accepts that injuries sustained before birth are nevertheless acquired. Other interpretations use various features such as the supposed prognosis, cause, speed of onset, or other features. While doubtless better definitions could be achieved, one must question the utility. How is this categorisation going to help?
Acquired brain injury, a helpful label?
The brain is central to adaptation, and adaptation is central to the General Theory of Rehabilitation, so constructing a category with brain dysfunction makes sense. Rehabilitation involves the patient understanding their situation, learning to change behaviours, coming to terms with losses, possibly changing life goals, etc. All these aspects of adaptation depend on the brain’s function.
In most other areas of rehabilitation, the person has their full brain function and, though the problems may be extensive and challenging, such as after a high cervical spinal cord injury or loss of two limbs after trauma, they have the neurophysiological and neuropsychological functions needed to change. For example, many will depend on technological assistance, which they can use, and they will need to learn new ways to achieve most goals.
A less compelling reason for using the category is the nature of the specific brain functions lost. Patients with brain disorders may have quite different losses, even within a group with the same disease. Cognitive and mood disorders are detectable in most conditions, but a patient’s primary loss can affect almost anything. For example, a person may have ataxia, choreoathetosis, quadriplegia, or tremor as the primary impairment; all are impairments of motor function, but the consequences and potential treatments vary greatly.
As a group, the range of cerebral dysfunction seen across all patients is vast, extending, for example, from mobile, disinhibited and cognitively impaired people after traumatic brain injury requiring secure accommodation to others with the same pathology who have a prolonged disorder of consciousness. Another contrast is between people who have had a stroke, leaving them with locked-in syndrome or severe aphasia but minimal motor loss.
Thus, if someone is classified as having an acquired brain injury (by any definition), one will have little idea about their rehabilitation needs or likely main difficulties. A service for people with acquired brain injury must cover the whole range of rehabilitation expertise, and the label does not allow a more focused service to develop centred on this category of patients.
What does the term not help with?
The discussion above shows that the classification does not help identify specific clinical needs or rehabilitation interventions. Are there other areas where the category might help?
It does not help determine prognosis. The disease determines the prognosis of patients with an acquired brain injury. Among acute onset conditions, recovery may be expected over 3-12 months, depending on the condition, and it is probably true that the severity of initial loss is the best prognostic indicator. These general rules are of little value in an individual case. Moreover, the long-term prognosis varies; for example, patients with stroke have recurrences and decline, whereas traumatic brain injury is not intrinsically recurrent.
Among progressive disorders, which are excluded by some definitions, there is a similar colossal range with some disorders progressing rapidly, some slowly, and some, like multiple sclerosis and stroke, having recurrent episodes.
Relation to other categories.
What might we learn from other rehabilitation categories?
Trauma rehabilitation shares two features:
- an acute onset and
- a vast range of clinical issues.
The UK trauma services started in about 2012 and have evolved. Trauma rehabilitation teams ensure the patient’s rehabilitation begins in the hospital, sometimes in a hyperacute rehabilitation area. Their primary functions are to:
- Identify all patients who need rehabilitation
- Identify the rehabilitation needs of each patient
- Identify the service best able to meet the person’s needs
- Refer them to the appropriate service or services.
- Write a rehabilitation prescription to document the injuries, impairment, immediate needs, and planned future rehabilitation.
The notable feature is the absence of specific trauma rehabilitation services outside the acute trauma centre hospitals. Patients are referred to other named services. This absence is not due to financial or other non-clinical reasons. Existing services can meet the needs of patients after trauma when they leave the acute phase of their trauma, albeit they are not sufficiently funded. The requirement is more funding for existing services, not new services.
Spinal cord injury services are separately commissioned, funded, and managed in the UK. They cover acute rehabilitation and offer longer-term support to some patients. However, the model is not ideal:
- Many patients face long delays before admission
- About 30% of patients do not get rehabilitation in specialist centres
- Patients with identical but non-traumatic spinal lesions are not accepted
- Patients with concurrent traumatic brain injury may not have their second problem recognised or may not be accepted
Some rehabilitation services specialise in treatment, such as providing wheelchairs, prostheses, and other assistive technologies. When undertaken with close liaison with the lead rehabilitation service, this usually works well, but if a patient is seen without any other rehabilitation input, results may be poor. One example is people receiving botulinum toxin for spasticity without concurrent input to ensure the muscle is stretched or the function facilitated.
People with acquired brain injuries, however defined, will also be involved with other specialist rehabilitation services, including the trauma, spinal cord injury, and assistive technology services discussed here.
Acquired brain injury rehabilitation?
Rehabilitation has many named services that have emerged piecemeal, responding to a perceived need. There is no logical, coherent framework guiding the classification of services, which is detrimental. Gaps exist, boundaries are unclear, leading to disputes and delays, resources are duplicated, and so on.
The service-level challenges facing us are that:
- A team or service should have expertise in something because no single person or team can be skilled at every aspect of rehabilitation.
- No logically coherent and consistent classification exists to use to classify service expertise. Currently, one of several descriptors is used:
- Disease, based on the biomedical, organ-based system
- Intervention, such as technology (e.g. wheelchair) or type of intervention (e.g. behaviour modification)
- The setting, such as community, level I inpatient, nursing home, etc
- Intensity or speed, such as slow stream or convalescence
- Service rarely publish their expertise or the patient needs they can manage, using a biomedical classification instead
- They may also be restricted by commissioning rules or criteria
Services for people with acquired brain injury will cover areas already covered and include patients from many existing services. Examples of overlapping named services include neurological rehabilitation, stroke, traumatic brain injury, many other disease-specific services, complex disability management, assistive technology, community, etc.
Thus, acquired brain injury is an inappropriate category for use within rehabilitation. It is based on disease, not disability or need. Any definition will include people with little similarity with the majority and exclude people with much in common. The vast range of rehabilitation needs of people with the diagnosis of stroke, which includes subarachnoid haemorrhage, illustrates the invalidity of using biomedical, disease-centred criteria in rehabilitation.
Any classification system must logically and coherently cover the whole range of patients so that no one is left uncategorised. Additionally, many people who live on borders must be allocated to the category that best suits them. Acquired brain injury is not part of any holistic classification system.
Therefore, we should abandon the term in rehabilitation. It has no value in biomedical or biopsychosocial healthcare practice.
The way forward.
This discussion provides vital support to delivering person-centred care to the patient and to providing services based on the patient needs that they meet, not a diagnostic label or category. Third, it justifies the development of collaborative rehabilitation networks with protocols guiding how patients are allocated to the best service to meet their needs, sharing responsibility with other services as needed.
The person-centred challenges facing us can be summarised as follows.
- Every patient in any group will present an extensive range of problems
- Every team with a particular area of expertise will not be able to meet 10%-20% of their patients’ issues.
- A significant, if relatively small, proportion of patients in any service will benefit from expertise held in another team or service
Although we can ignore the problems we cannot act on, leaving them to be considered after we have finished, we should seek help. If we do seek help, we should count how often we do this and for what purpose. If many patients have the same problem, we should consider developing expertise within our service.
Seeking help can be challenging because:
- It is serendipitous, depending on who knows what; there is no universally accessible register of services describing what they do and how to access them.
- Funding issues often arise and cannot be resolved quickly, leading to prolongation of rehabilitation and lowered efficiency.
- Practical geographic considerations may make it infeasible.
A collaborative rehabilitation network would overcome many of these difficulties. It would require services to specify the problems they can manage and their competencies. The patient’s team could then discover who has the required knowledge and skills. An agreed-on protocol would deliver referral and funding. In this way, the rehabilitation service would deliver proper person-centred rehabilitation.
Conclusion
When I started writing this post, I intended to use the General Theory of Rehabilitation to show that the principles underlying acquired brain injury rehabilitation were universal. I anticipated finding some unique areas justifying the separate grouping of patients. However, once I began to explore what the term acquired brain injury meant, I realised it was an invalid label that made a very complex system just a bit worse. I arrived at a destination I had not expected, reinforcing the need for collaborative rehabilitation networks. This need emerges from the absence of any logically consistent framework for classifying and organising existing rehabilitation services. I suspect there is no system one could use if redesigning them from scratch.
1 thought on “Acquired Brain Injury rehabilitation”
Professor’s Wade way of thinking resembles the ancient Greek philosopher’s thinking. It made me think in a completely different way from the one I have been thinking so far. It make sense. Instead of focusing on “labels” of broad symptom “diagnoses” we could focus on the patient’s needs and the skills required to help them.
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