F-39 Amputee rehabilitation

This competency covers people of any age who are missing part or all of a limb or have an atypical limb structure. There is no good name for rehabilitation for people with limb problems. Amputee rehabilitation excludes people with congenital limb problems; prosthetic rehabilitation focuses on one intervention, which is not applicable or appropriate for everyone; and limb loss rehabilitation also overlooks congenital disorders.

This subspeciality significantly focuses on prostheses, with many consequences. Services and research are often concerned with mechanics, electronics, and engineering. Prosthetists, a professional group, have a leading role in rehabilitation because of their expertise in prostheses. Patients who cannot benefit from a prosthesis are often given less attention. Some prostheses are expensive and unavailable to patients; conversely, commercial interests may promote specific prostheses without solid evidence of superior benefit over cheaper prostheses.

This page will focus on the more generic rehabilitation aspects. Anyone specialising in this field will acquire detailed information about individual prostheses. Still, prosthetists will always be available and have the required knowledge and skills concerning prostheses.

The competency: amputee rehabilitation

The rehabilitation expert is “able to assess and manage any patient of any age with absence or atypical structure of any part of one or more limbs.” This includes people with congenital limb conditions and people who cannot use or benefit from a prosthesis. A downloadable document gives details about indicative behaviours, knowledge, and skills. It also includes some references.

Introduction

We use our limbs to achieve almost all functional activities, with communication and social interaction being the only notable exceptions. The appearance and use of our limbs also contribute significantly to our self-image and perception of who we are and how we appear to others. The potential effects of even an apparently minor change or loss in limb structure may be extensive.

Consequently, professionals and services involved in the post-acute, non-surgical management of people with an atypical limb structure must consider a patient holistically and not become too centred on the primary evident problem with the limb. Hugo Senra and colleagues illustrated this in a qualitative study of 42 people who had had a leg amputated. They concluded, “The self-identity changes after a lower limb amputation appear beyond the patient’s body image and functioning, affecting the patient’s awareness of the impairment, biographical self and any future projections.”

Pain, especially pain felt in the amputated limb, is another significant issue for many patients. Historically, this was considered a neurotic consequence of the loss but, as Tamar Makin wrote, “It has long been established that phantom limb pain is a real physiological condition.”

This quotation raises two issues. First, the term ‘phantom limb pain’, sometimes abbreviated to phantom pain, implies that the pain is phantom (i.e. “a figment of the imagination” [OED]). It most certainly is not. Second, it raises the issue of so-called “real pain”, whether qualified as physiological or not. Whenever someone talks about ‘real pain’, I always ask them to tell me what is “unreal pain”. The definition of pain is, “An aversive sensory and emotional experience typically caused by, or resembling that caused by, actual or potential tissue injury.”. There are three types of pain: nociceptive, neuropathic, and nociplastic. All are pain.

Evidence and effectiveness

I am unaware of any randomised trial comparing the provision of a prosthesis with not doing so, which is unsurprising as it would now be unethical. The answer is so apparent that a trial is not needed. The same applies to providing someone who is paraplegic with a wheelchair.

The main issues relate to other matters, such as the relative benefits of two prostheses for the same limb loss and the relative costs and risks. For example, osseointegration (having a means of fixing a prosthesis to a bone) may offer some advantages, but it also carries risks. In 2018, a systematic review found no comparative trials and significant variation in the estimated risks, with reports of benefits. Available guidelines remain cautious but are likely to evolve with increasing experience.

Few randomised studies investigate any aspect of amputee rehabilitation. A systematic review in 2018 identified just one. However, they can be undertaken. Lonwabo Godlwana and colleagues studied 154 people in South Africa who had a leg amputation. They showed that a home-based exercise and education programme improved several aspects of mobility and quality of life at three months; at six months, only quality of life remained significantly better.

Robert Gailey and colleagues undertook a randomised pilot study on 18 people at least one year after leg amputation using a prosthesis. They found that an eight-week evidence-based programme improved mobility significantly. The programme covered:

Increasing cardiopulmonary fitness
Strengthening trunk and leg muscles
Balance and coordination exercises
Weight-bearing and stance-control exercises
Training of gait using the prosthesis.

Another systematic review investigated interventions aimed at improving people’s lifestyles (e.g., stopping smoking, doing more exercise) after leg amputation. Although 13 randomised studies were found, the quality was too low to draw any conclusions.

Last, a systematic review of available guidelines found that most were based on opinion, with minimal evidence. Furthermore, the policies did not cover many aspects of rehabilitation. Third, the contents of the rehabilitation programmes recommended were not described adequately.

In a nutshell, there is enormous scope for randomised controlled trials in almost any aspect of rehabilitation for this group of patients, and, as Lonwabo Godwana and her colleagues showed, excellent trials can be undertaken in resource-poor healthcare settings.

Patient experience

Understanding a patient’s feelings and experiences is vital in rehabilitation. As I have discussed, this is empathy, and it is essential to distinguish it from sympathy. One way is by qualitative research, which can investigate the patient’s experience of the disorder and rehabilitation; both are crucial information for anyone undertaking rehabilitation.

Melissa Day and colleagues investigated everyday experiences of “good” and “bad” days in people with lower limb amputation. Their particular interest was in the consequences of fluctuations in symptoms. Everybody has fluctuations daily; it is part of everyday life. However, when one is not ill, such fluctuations are accepted and usually not noticed. If someone has a health condition, the fluctuations may have a more significant effect because one has less reserve. One may also attribute significance to the change.

They studied eleven people with leg amputations. Pain was a dominant issue, how it fluctuated and how they managed the pain and its changes. Second, all patients needed to plan many of their activities much more than beforehand, and daily changes influence not the planning itself but their reaction to their success; sometimes they feel pleased, at other times frustrated at the difficulties faced.

The third feature affected by the daily change was their body perception. On good days, they felt comfortable and not self-conscious, and they did not mind their prosthesis being seen; on bad days, they felt vulnerable and unwilling to acknowledge their loss publicly. The last feature was the fluctuation in how others interacted with them or, probably equally important, how they interpreted the interactions with other people. On some days, a person or people would be kind, empathetic, or offer help unasked, which made their life better; on different days, they perceived less kindness or interpreted the reactions of others negatively.

All qualitative studies refer to pain, and this will now be considered.

Pain and amputee rehabilitation

An excellent review, Making Sense of Phantom Limb Pain, by Hunter Schone and colleagues explores all aspects of pain after amputation. I will first draw attention to two essential points:

Most patients experience some pain. The epidemiological studies are weak, and uncertainty remains about its frequency, the nature and severity of pain, prognosis, and natural history.
There is residual limb pain, felt in the stump, and phantom limb pain, experienced as located in the phantom limb.

Pain in the phantom limb is associated with (in order of the number of studies supporting the association):

Residual limb pain
Pre-amputation pain
Other, non-painful phantom limb sensations
Proximal amputations
Leg amputation
Diabetes
Depression after amputation
Use of prosthesis.

Treatment is challenging, and many interventions are used. The evidence is not strong. Treatments mentioned by 27 experts surveyed and agreed by at least half were:

Mirror therapy
Graded motor imagery
Cognitive behavioural therapy
Functional prosthesis
Sensory discrimination training
Virtual reality training
Amitryptiline

Strikingly, only one pharmacological intervention was supported, and it was not an anticonvulsant drug.

Conclusion

Rehabilitation services and research primarily address the choice and use of a prosthesis and pain, which is frequent and intractable. Broader aspects of rehabilitation, such as vocational training and psychosocial interventions, have not been studied much. Thus, the rehabilitation expert must draw on general principles. The interest in the bio-electro-mechanical aspects of prostheses must be matched by an interest in psychological well-being, managing social attitudes and stigma, and work and leisure. In this field of rehabilitation, there is also an urgent need to evaluate the costs and benefits of increasingly expensive and complex prostheses, especially hand and arm prostheses. In all healthcare systems, consideration must be given to what funding will be provided for prostheses and how this will be allocated.