Acute emergency treatment for the loss of oxygen to parts of the brain as a result of a stroke can be standardised – our brains respond in a certain way, and the same treatments will have similar effects in most patients. But the nature of stroke is that, depending on precisely where it happens and how severe it is, essentially the same kind of event in the brain can lead to very different problems afterwards.
Helping someone to recover their ability to function in the world after a stroke has to be personalised because every stroke patient is left with a different set of abilities. It is not surprising, therefore, that those who do research into new techniques and practices for rehabilitation emphasise the importance of individual patients, as Michael Regnier has been finding out.
Marion Walker puts patients at the heart of everything she does. Having trained as an occupational therapist, she has been involved in research for some 25 years and is now Professor in Stroke Rehabilitation at the University of Nottingham, and rehabilitation lead of the UK Stroke Research Network. It is evident that underpinning her research is the same care for patients that originally motivated her to go into occupational therapy.
“We have worked hard to include stroke patients, having them comment on what we are doing, be co-applicants for grants and sit on steering committees,” Walker says. “And at Nottingham, we have an Ambassador for Stroke Rehabilitation who leads a consumer group that helps make sure we are dealing in the research areas important to stroke survivors.”
For example, she says that over half of all stroke patients still struggle to dress themselves two years after their stroke. Often they have overcome the physical problems, but there is a cognitive dimension to dressing that anyone who has not had a stroke would hardly notice.
“People can lack ‘initiation’ – they just can’t get started,” she explains. “This may come across as uncooperative or lazy behaviour but it is a neurological consequence of the stroke. Some experience a disconnect between the brain and the body – they know what needs to be done but their muscles don’t obey. Others will only dress on one side because damage in one half of their brain means they don’t pay attention to the corresponding half of their body.”
Walker has a simple but effective exercise to help overcome the inattention problem: she puts small bits of felt on the side of the person’s body that they are not paying attention to. They then have to remove all the felt before they start to get dressed. It reduces the extent to which their brain ignores that side of their body. Similar therapeutic interventions can be used to help in other daily activities.
However, there are still many problems experienced by stroke survivors that can go unnoticed by the professionals around them. According to the patients in Nottingham, it is these ‘hidden’ problems that are most difficult to cope with: low mood, anxiety, lack of confidence and cognitive problems. Communication can be hard and people can be written off as lacking motivation when perhaps they haven’t understood everything that has been said; or if a patient leaves half their food, their carer may assume they are not hungry when, in fact, their brain simply isn’t seeing the food on one side of their plate.
Fortunately, researchers like Walker – working in partnership with patients – have started to attend to these problems as well. But research was not always a mainstay of rehabilitation practice. “When I qualified as an occupational therapist, I didn’t read journals – techniques were developed through trial and error,” she says. “It is a different era now. Clinical guidelines for rehabilitation therapies are informed by evidence.”
Step by step
In 2009, the National Institute for Health and Clinical Excellence (NICE) reviewed the evidence and issued guidelines for a new technique called functional electrical stimulation (FES), used for treating a condition called ‘drop foot’. This is common among stroke survivors as well as in people with multiple sclerosis or spinal cord injury. It means they are unable to lift their feet as they walk, so their toes drag along the ground, risking falls and injuries.
FES works by providing an electrical stimulus to the nerves that control each foot. The stimulus is timed with the patient’s walking cycle so that each foot is lifted at the right moment. There is an external version, which has been used by several thousand people, and an implantable version, which so far has been used in about 50 people who cannot use the external device.
Dr Paul Taylor was on the research team at Salisbury District Hospital that developed these FES devices for drop foot. He says it was not an easy task to get FES accepted everywhere that patients wanted it, even after NICE had approved it: “Even now, it can be a battle with individual Primary Care Trusts. Some have tried introducing policies not to use FES but after appeals from patients and clinicians, in many cases they have returned to a policy of funding it.”
Taylor is a biomedical engineer but his contribution to the new technique has continued beyond the research and development stage. “Everything had been made in-house in the Salisbury Clinical Science and Engineering Department,” he explains. “So when people started to get interested after the trials and began asking for devices to use, we had to make and supply them – it meant getting the proper safety and quality control in the manufacturing processes and so on. It became a bit of a business.
“We never envisaged doing so much – but there was not much of an option for the private sector to come in and take over. Demand came to our door and we responded. It grew step by step until it became a viable business.”
So much so that in 2007, Salisbury NHS Foundation Trust created a spin-out company: Odstock Medical Ltd. Even today, the research team continues to provide training courses and materials for clinicians using FES, including instruction manuals and protocols for its clinical use.
Taylor and his colleagues are now using the same principles of FES to help people to use their upper limbs. As with legs, a stroke can leave arms and hands severely weakened – although, as Taylor says, “arms are a bit more complicated than legs”.
Despite this extra complexity, a device has been developed that stimulates the nerves in the arm to help people reach out and grasp objects. A sensor detects movement at the shoulder as the patient reaches out. The device then follows the pattern of nerve signalling in able-bodied people, stimulating the relevant nerves to signal first to the muscles that extend the elbow and then to those that open the hand.
While the equivalent leg device is more or less permanent, the arm device is intended to support patients as they regain their strength. In the trials, patients have been assessed before and after three months of daily practice, and then reassessed after a further three months without using the device to see if the benefits are maintained. Analysis of the data is ongoing, but the pilot indicated the treatment improved hand-arm coordination. If it proves successful in the larger trial, the researchers know they already have a good business model for developing it as a product.
Game therapy
At Newcastle University, a different approach to arm rehabilitation is also close to launching a product. Janet Eyre, professor of paediatric neuroscience, leads an innovative project called Limbs Alive. Its name was inspired by a young patient who was working with Eyre and her colleagues, relearning to use his arms and hands through play.
“He said he felt his limbs were coming alive again,” Eyre recalls.
“We are trying to take that feeling of being or coming alive again, and take therapy out of the clinical setting so that patients can forget they are doing therapy and be motivated because it is fun. This has become our philosophy – patients have fun and gain skills without being consciously aware that they are trying to correct a medical problem.”
A woman playing ‘Circus Challenge’ at home
The Limbs Alive team is working with a professional gaming studio to develop a suite of bespoke computer games called ‘Circus Challenge’, specifically designed to help people after stroke. “We are using action video games not only because they are part of normal leisure activities, but also because they contain all the key elements for effective motor learning,” explains Eyre.
“Rehabilitation therapy is years behind gaming. The design of video games has been driven by evolution: only the best survive, and the best are the ones that make it easiest for people to learn complex tasks. So there is a fantastic resource in the gaming industry of people who understand how to motivate people to learn new moves and then motivate them to continue playing the game.”
Through a series of mini-games in ‘Circus Challenge’, players take part in circus acts including flying trapeze and tiger training. The actions required in the games incorporate 140 coordinated arm and hand movements that research shows form the functional bases for activities of daily living, from pouring a drink to zipping up a coat. One or more of these movements is introduced at each new level of a game, with the increasing difficulty levels systematically building up their complexity. This approach is only possible because Limbs Alive is using the next generation of commercial wireless game controllers (designed for consoles like the Nintendo Wii), which provide very precise information about hand and arm position.
“It’s been an enormous learning experience,” says Eyre. “In our team we have computer game engineers so that we can adapt the structure of the game and get the data we need. Data from selected moves are being downloaded and transferred to a server so that algorithms can be developed to provide detailed analyses of a patient’s progress during rehabilitation.”
The project’s mathematicians are also developing accurate and reliable algorithms for data analysis that translates how well someone performs the moves in the game to how much more recovery may be possible with continued practice, and how independent they could be in real life.
It is people and their real-life needs that drive the research team. Having spent her research career so far investigating the science of brain recovery after stroke, Eyre says she now wants to apply her knowledge, translate it and return the benefit to patients: “It is important that in this case, the goal is a product, not just a scientific paper.” There is currently no commercial market for games in health, but Eyre is adamant that her product should be suitable for use in the NHS and elsewhere: “We are developing a product that is based on good science, answers a real problem and is available at affordable cost.”
The team is working closely with patients and with the clinicians and therapists in the North East Stroke Research Network to ensure the product will meet their needs. The patients’ reactions to the games have been extremely positive: “The videogame idea started with young patients but older patients like the idea as well,” says Eyre. “Patients who have never played a videogame – never used a computer, even – really value and enjoy this approach. Age is not a barrier.”
The use of technology in rehabilitation has great potential, enabling stroke survivors to undertake a skilled therapy programme at home and in their own time. But, Eyre says, computers will never make therapists redundant: “Rather than replace therapists, we’re offering them a new tool to help their patients. This research will ensure that therapists can monitor their progress and provide help and advice as necessary.”
Nice gesture
A similar philosophy is to be found at City University London, where a computer ‘gesture therapy’ tool called GeST has been developed. It, too, involves practical exercises delivered as part of a game, but rather than commercial gaming platforms it uses tailor-made software to help people with aphasia – a language disorder, typically caused by stroke, that does not affect a person’s intelligence but impairs their ability to speak and understand others.
Professor Jane Marshall, a co-investigator on the project, knew from previous research that gesture could be relearned in aphasia just as speech can. We all use gestures to aid communication when we speak, ranging from pointing to what we are talking about or adding emphasis to certain words, to gestures with specific meaning, such as a thumbs-up sign or miming signing a cheque to ask for the bill in a noisy restaurant.
Although gesture and language are closely connected, they are not controlled by exactly the same brain areas and it is possible for one function to be damaged more than the other following a stroke. This was starkly illustrated by a study of deaf survivors of stroke, conducted by Marshall and colleagues at City University, which showed differences between gesture and sign language.
“There was one gentleman who, if you asked him to make the sign for something, he was impaired,” says Marshall. “But if you asked him to make a gesture for the same concept, he could do it, even when the form of the gesture was very similar to the form of the sign. This suggests that gesture and language come from different places in the brain.
“For some individuals, even those with severe aphasia, gesture could be an area of relative strength. We have been doing research to see whether therapy can help people with aphasia use gesture to bolster their communication skills.”
GeST employs a customised keyboard and a laptop computer to help people with aphasia after a stroke to learn and practise 30 specific gestures. The aim is to give them the confidence to develop more gestures of their own, which will help them communicate.
First, the gesture is demonstrated in a video on the screen. Then, the user has opportunities to practise making the gesture within a game. Critically, the computer gives feedback on gestures by using vision-based gesture recognition software, helped by the user wearing a bright yellow glove.
Several researchers at City University have worked on developing the program, including speech and language therapists like Marshall and technologists and researchers from the Centre for Human Computer Interaction Design. Still at an early stage, GeST has been well received by the ten volunteers who have tried it in a pilot study.
Crucially, it has also been welcomed by the participants’ families. “Involving family members makes sense because we are going into people’s homes and introducing a piece of technology which might be disruptive,” Marshall explains. “If GeST were very effective but at the expense of totally disrupting the family home, that would be an unexpected and undesirable side-effect. But I don’t think we’ve had any negative responses so far.”
As well as doing research, Marshall teaches on City University’s speech and language therapy courses. She says it is a relatively new profession that in recent decades has become much more research-orientated. “Speech and language therapy only really got cracking after World War II, and then it was dominated by ‘nice ladies’ trying to help.
“I’d like to think that has changed. Our students get trained in research methods and evidence-based practice. They are instilled with the notion that there should be an evidential basis to their therapeutic techniques.”
Clearly, modern practitioners in speech and language therapy, occupational therapy and physiotherapy are ready to incorporate the results of research into their work. But how does research translate into the ‘evidence base’ and how does the evidence get implemented?
Rehabilitation translation
Marion Walker compares developing a new rehabilitation therapy with bringing a new drug to the market. “A drug is fairly straightforward to introduce into the clinic but rehabilitation is a complex intervention, a process,” she says. “Rehabilitation didn’t have a research culture until the 1980s, although it has gradually moved to a culture of critiquing practice and doing large studies.”
Paul Taylor agrees that researching rehabilitation techniques is challenging and that this can obstruct progress: “Blinded trials are generally not possible, so the evidence appears to be of a lower quality than the gold standard randomised controlled trials required by NICE. It is harder to get the results accepted.
“You can have standard treatment as a control but that’s not very easy, in fact. It’s not that standard, and more often than not, ‘standard treatment’ is no treatment at all. So you have to provide some treatment to the control group to control for the attention paid to the people using FES. It is difficult.”
A better approach might be to compare existing and new techniques to see which one works best. The FES team at Salisbury recently led a survey of all new technologies used to improve hand and arm function after a stroke as part of ATRAS (Assisted Technologies for Rehabilitation of the Arm following Stroke), a project funded by the National Institute for Health Research (NIHR).
After identifying the most promising tools – or combinations of tools – in development, ATRAS will run a clinical trial of those treatments. The results will inform the development of a ‘care pathway’: a standard package of treatment for use in stroke units throughout the NHS in England so that clinicians can make consistent decisions in the best interests of their patients who require arm rehabilitation.
Even when scientific evidence is clear, how to implement the findings may not be. Walker is leading a £4 million programme putting stroke research into action. It is part of an NIHR initiative that has established Collaborations for Leadership in Applied Health Research and Care, designed to understand and improve implementation of research within health services. One of the first things Walker’s programme looked at was early supported discharge for stroke patients.
“There is a lot of evidence that early discharge into the community, with organised rehabilitation at home, can improve performance and reduce costs,” she explains. “The problem is that, while a systematic review confirms the evidence, it does not tell you how to implement and manage the strategy. The UK’s National Stroke Strategy now says all stroke services must have early supported discharge, but not everyone is following the evidence – for example, that it works best for mild to moderate strokes.”
To improve the situation, Walker and her colleagues took the research evidence and packaged it with practical information for therapists, service managers and healthcare commissioners. “It is amazing that this had not been done in a systematic way before,” she says. “But while the evidence base for stroke rehabilitation has grown enormously in the last 20 years, the active management of findings by researchers and subsequent action within the clinical community has been less impressive.”
To create the early supported discharge guidelines, the team convened an expert group to digest the research findings, interpret them and agree on the key practical points. Of course, this is not the only way to encourage appropriate implementation, and more research is needed to provide examples of successful methods in the research literature.
“It is important to understand the context of implementation,” adds Walker. “This kind of knowledge transfer is not a one-way street from research into practice, but a multi-directional process involving researchers and clinicians as equal partners learning from each other.
“Research should continue alongside implementation to identify best practice and to share those findings.” An example of this is a forthcoming paper Walker co-authored with colleagues in Canada and Australia, detailing various approaches to implementation. “It is the paper I wanted to read three years ago,” she says.
To give people the best opportunities to regain as much of their previous lives as possible after strokes, it is vital that rehabilitation therapies are based on the best evidence available, rather than being handed down from one generation of therapists to the next. Research is an essential part of modern rehabilitation, therefore, and it benefits researchers to work with patients so they can understand the real problems people face.
They also get to see the results. On the morning I spoke to Paul Taylor about FES, he had just received an email and photo from a woman who had completed a 5 kilometre run in aid of the Stroke Association. She had done it using her FES device.
Notes and references
Limbs Alive is funded by the Wellcome Trust and the Department of Health through the joint Health Innovation Challenge Fund; Jane Marshall’s study on deaf stroke survivors was funded by the Trust.
GeST was developed with funding from Research Councils UK Digital Economy Theme, and the FES research at Salisbury is supported by the Stroke Association.
Walker MF et al. The DRESS trial: a feasibility randomized controlled trial of a neuropsychological approach to dressing therapy for stroke inpatients. Clinical rehabilitation 2011 [epub ahead of print]. PMID: 22180445
Taylor P et al. (1999) Clinical audit of 5 years provision of the Odstock dropped foot stimulator. Artificial organs, 1999;23(5):440-2. PMID: 10378938
Mann G et al. Accelerometer-triggered electrical stimulation for reach and grasp in chronic stroke patients: a pilot study. Neurorehabilitation and neural repair, 2011;25(8):774-80. PMID: 21628605
Marshall J et al. Gesture and naming therapy for people with severe aphasia: A group study. Journal of speech, language, and hearing research : JSLHR 2012 [epub ahead of print]. PMID: 22337498
Atkinson J et al. Testing comprehension abilities in users of British Sign Language following CVA. Brain and language, 2005;94(2):233-48. PMID: 15896396
Fisher RJ et al. A consensus on stroke: early supported discharge. Stroke; a journal of cerebral circulation, 2011;42(5):1392-7. PMID: 21441151
Image credits: Wellcome Images
This article is part of the Wellcome Trust’s Focus on stroke, a series of articles, interviews and videos running throughout May 2012, which is the Stroke Association’s Action on Stroke Month.
For more information on stroke, visit the Stroke Association’s site or call its helpline on 0303 303 3100. If you or someone with you is suspected of having a stroke, call the emergency services immediately.
Filed under: Features, Focus on stroke, Technology Transfer Tagged: drop foot, FES, focus on stroke, GeST, Jane Marshall, Janet Eyre, Limbs Alive, Marion Walker, occupational therapy, Paul Taylor, physiotherapy, rehabilitation, speech and language therapy, stroke
