For many, limb amputation is not the end of suffering. Instead, it’s the beginning of a new and often invisible struggle – one that affects the patient’s sleeping patterns, mobility, mental health, and overall quality of life long after surgery.
Dr Katleho Limakatso shared these remarks with his audience during the opening session on day one of a two-day workshop, titled “Advancing post-amputation pain management in South Africa”. Dr Limakatso is a senior lecturer in the University of Cape Town’s (UCT) Department of Anaesthesia and Perioperative Medicine. His work over the years has broken ground on pain management for amputees who experience phantom limb pain. The workshop took place in UCT’s Neuroscience Institute auditorium on 20 and 21 May. The event brought together local and international clinicians and students for two days of robust discussions on understanding phantom limb pain.
Phantom limb pain is characterised by painful sensations such as burning, cramping and throbbing in the region of a patient’s amputated limb. In some instances, patients also experience non-painful sensations like itching, tingling and pressure.
“It is a growing national health challenge that demands greater research, collaboration and innovation in care.”
“In South Africa in particular, where amputations are increasingly linked to diabetes, trauma and vascular disease, post-amputation pain is not a niche issue. It is a growing national health challenge that demands greater research, collaboration and innovation in care,” Limakatso said.
The realities
As he kicked off his presentation, Limakatso told the audience that there are three realities linked to phantom limb pain that clinicians cannot ignore. Firstly, the burden of limb amputations is increasing globally (this includes South Africa). And with the rate of diabetes and vascular complications on the up, particularly in resource-constrained settings, there’s been a surge in the number of lower limb amputations too. Yet, pain management after amputation remains under-recognised and under-prioritised.
In addition, he said, pain after amputation is complex. It affects more than just the biological and nervous systems. It influences mobility, the use of a prosthetic limb, the patient’s identity and how they reintegrate into society after an amputation. Therefore, adopting a biopsychosocial approach or framework to understand and manage phantom limb pain is necessary to address the challenge.
“If we collaborate and work towards concerted efforts to address phantom limb pain and disability, we can achieve greater outcomes compared to when working [alone]. This symposium is not just about discussing pain – it’s about rethinking recovery after amputation in South Africa. [It’s about] prevention and pre-operative education [as well as] rehabilitation, reintegration and long-term quality of life,” he said.
The prevalence
According to Limakatso, the prevalence of phantom limb pain globally currently sits at 64%. What this means is that seven in 10 people suffer from phantom limb pain after an amputation. But while on a quest to find these answers, he said, research also indicated that the data on its prevalence in African patients was virtually non-existent.
“Due to the differences in biopsychosocial discrepancies and varieties between populations in Africa and elsewhere, it made it challenging for us to conclusively know how big of a burden phantom limb pain is in Africa,” he said.
As a result, Limakatso and a team of researchers conducted the first research study that aimed to understand the prevalence of phantom limb pain in African populations. Researchers recruited patients from Groote Schuur Hospital (a UCT teaching hospital) in Cape Town and from a tertiary-level hospital in the Eastern Cape. He said their results revealed that the prevalence of phantom limb pain in both provinces sits at 71%, which was comparable and in line with global estimates.
Create awareness
With these alarming statistics, he said, clinicians and health system leaders must be aware of the challenge.
“As we focus on other conditions, we always have to be mindful – every time we see a person with a limb amputation – to enquire, to assess, to probe about the potential of them experiencing phantom limb pain, which in most cases is debilitating,” he said.
Equally important is establishing coordinated efforts to develop and implement effective strategies to prevent and manage phantom limb pain, as well as clear care pathways. In addition, he said, with awareness, clinicians can provide patients with the right education to help improve their outcomes.
“If patients have accurate information on what causes phantom limb pain and they are aware of it, it makes it easier for them to come back to us later on to seek care,” he said. “Not only is this adequate for us to manage this condition but we need to attend to issues very early on to manage or prevent it. This will make things easy for most people [experiencing phantom limb pain] going forward.”
Potential treatment
But what causes phantom limb pain? Limakatso said researchers still don’t have definitive answers. However, what they do know is that there are multiple systems involved.
“The consensus at the moment is that there are multiple systems across the periphery to the brain that are involved with instigating and even maintaining the pain patients experience.”
“I will also be working towards establishing a model of care pathway to address key patient priorities across the perioperative journey.”
Limakatso said his goal as a clinician and researcher is to identify affordable and effective treatments that can easily be leveraged for phantom limb pain in the South African context. As part of this work, he said researchers conducted a special study to identify promising treatments for phantom limb pain. About 27 clinicians and researchers from 16 countries engaged in discussions, and a total of seven treatments were deemed effective to reduce phantom limb pain. The top three are: mirror therapy, graded motor imagery (GMI) and cognitive behavioural therapy. GMI and mirror therapy, he explained, showed most promise in South Africa. Following this work, the team will now work towards developing a standardised, optimised protocol for mirror therapy, so that treatment is provided consistently from one patient to another going forward.
“But the care model for phantom limb pain or amputation is still not entirely clear for South Africa. Therefore, with my health systems background, I will also be working towards establishing a model of care pathway to address key patient priorities across the perioperative journey,” he said.
In the next year, Limakatso and his team will also conduct a nationwide study on the prevalence of phantom limb pain.
This work is licensed under a Creative Commons Attribution-NoDerivatives 4.0 International License.
Please view the republishing articles page for more information.