Technology in rehabilitation (Part 3): The patient's view.

In this third article in the series focusing on technology in rehabilitation, I’m looking at the patient's viewpoint on products that aim to support therapy and facilitate functional recovery.

What does a patient want from rehabilitation technology? What do they need? What do they expect? What do they actually receive, and from whom? You might think that these are easy questions to answer; surely patients want technology that helps them recover with as little risk and cost as possible. Are they getting it?

Let's explore some of the issues, focusing primarily on people following a spinal cord injury and with a stroke rehabilitation example.

What happens after acute care?

Those who find themselves in need of rehabilitation following a stroke, spinal cord injury or other neurological condition may discover that the NHS can do a good job in providing the necessary acute care but is less adept at offering the individualised and intensive effort necessary for effective rehabilitation. I have never met a patient who complained they received too much therapy!

In recent years, it has been shown that technological innovations, such as robotics, exoskeletons, FES and virtual reality, alone or combined, can offer a way to improve neurorehabilitation outcomes and allow for a better quality of life. In fact, some studies have highlighted that intense and repetitive training in a personalised context leads to promising results regarding functional recovery in patients with various neurological diseases. Making this appear cost-effective is not easy, so we have a massive need that is not easily matched by a response.

In 2022, the NHS and social care are resource hungry but, even in better times, all healthcare systems tend to struggle with providing necessary and sufficient, plus individualised, rehabilitation.

When resources are tight, healthcare is going to be rationed and directed to where it can seem to make the biggest impact. This can seem particularly harsh to patients like ours who can fall on the wrong side of the decision line. Healthcare systems tend to be most efficient when they are using approaches that are optimal for dealing with large populations allowing standard approaches to problems.

When a person has had a spinal cord injury they will need a great deal of acute care at first that is naturally influenced by their level of injury and any complications. They will reach the stage where they need a more tailored approach - akin to a "personal trainer" who can help assess their ability to make progress, identify some realistic goals, marshal some resources and then get to work. Sounds OK so far.

So how should this tailoring be guided? How does the patient know what rehabilitation can deliver for them? Can clinicians accurately predict what is possible for a individual? It is easy to see this is a potential problem.

Complete versus incomplete

I had an interesting conversation recently with a client who has a spinal cord injury. He described how in hospital he was told he had a "complete" spinal cord injury and that he could never expect to be able to stand and walk unaided again. At that point he said he mentally "moved on" and put any thoughts of walking out of his mind. The point was settled.

At the same time, another patient in the spinal unit at the same time was told he had an "incomplete" injury and was able to embark on regular gait training sessions with the therapists. However, it didn't take long for this person to become depressed and upset because his recovery had not progressed at the pace he expected. He was frustrated because he believed he had potential that he was not able to exploit despite the rehabilitation technology and physical activity he was performing.

The lesser evil

My client pointed to the fact that he wasn't sure what was worse - to be labelled as having no potential for recovery or - as having some potential but not being able to discover it.

Of course, the point is neither of these two individuals is likely to be achieving their potential for functional recovery and both are confused about what is actually possible for them.

And the clinicians may be confused too ..

Many years ago one of my mentors was the Professor of Orthopaedics at the Hospital for Sick Chldren in Toronto. Bob Salter was someone I really respected and admired. He liked to remind us of his particular interpretation of the word "idiopathic" - (which varied from that you would find in the dictionary). He used it to remind us that in many situations we were dealing with "the doctor is an idiot and the patient is pathetic".

As anyone who works in this field knows, people are as individual as pebbles on a beach. We are dealing with attitudes and beliefs - sometimes overtly and sometimes hidden and there is the sometimes an emotionally charged clinician - patient relationship. We also have less knowledge than we would like.

Presented with exactly the same situation, people will respond in many different ways. Clinicians want their patients to be "realistic" but this can be interepreted by some patients as killing hope. Other hear the same message and can emotionally move on.

Perhaps patient expectations are higher these days too. Lots of people have now heard of neuroplasticity and believe that some recovery is at least possible for just about anyone but it’s not necessarily easy.

I have spoken to lots of people who were upset because they saw other patients apparently receiving more therapy than thermselves. This was perhaps because the other person's injury suggested to clinicians they could benefit more from a particular intervention. Some accept their situation as presented by their clinicians and resign themseves to it passively and others will challenge it. It's far from a perfect situation.

The need for achievable goals

All of this points to the need for more accurate goal setting for rehabilitation and technology that supports that ambition.

I think this would be particularly valuable for patients (and their clinicians!). In pretty much all walks of life we need accurate measurement to assess a situation. We need to know our starting point and be able to see we are moving in the right direction.

In rehabilitation, setting goals we can rely on should increase patient motivation and drive, allow the rehabilitation process to be better monitored and stop ineffective interventions. It should also enhance the efficiency and effectiveness of therapy and rely on shared decision making.

Expectations and reality

With a spinal cord injury the ASIA classification is intended to be a useful guide to the consequences for the sensory and motor functions. Although an ASIA score is useful, I have met lots of people who see their ASIA classification as an absolute marker of what is going to be possible for them to achieve through therapy. They often think that a complete injury means that the spinal cord is completely severed and yet that is rarely the case in practice. On the other hand, someone with an incomplete injury may expect recovery to be straight forward when this is certainly not likely to be the case at all.

We often meet people discharged from hospital with a particular ASIA score who have basically assumed or been told they have no potential for improvement.

Intensive therapy centres

Around 2009, Peter Carr showed us what might have been the first UK private facility dedicated to providing intensive rehabilitation for persons following a spinal cord injury. The “Standing Start” organisation took root in Peter’s back garden in Cambridgeshire in the form of a rather large shed stocked with exercise equipment.

Before long, Standing Start moved to a local commercial unit and recruited it’s first therapist - Andrew Galbraith. Over time, Standing Start morphed into Neurokinex and Andrew went his own way and established Prime Physio in Melbourn, Cambridgeshire.

A growing number of centres with similar intent have now been created across the UK and these typically offer a mix of intensive exercise based physical therapy and technology based programmes to private clients with a disability. Some stress the importance of the available technology to what they do and offer packages such as intensive therapy “holiday” weeks.

The technology in the mix will vary a great deal and might be intended to reduce the need for manual intervention - for example by making it possible to carry out more repetitions of an exercise, by providing some support to the effort required by the user or guiding the path of a movement.

The most important question is obviously “Do these facilities produce results?”.

This is quite hard to answer in a general way because as we have seen, each client will have a different potential for improvement, will have particular goals and expectations in mind and varying levels of motivation. The feedback we get is that some people get good results and some don’t but some of this might just be down to expectations again.

We do know that exercise based therapy ‘works’ and so it is definetly a good development to see these centres spring up. However, as some of these centres become more expensive and seem to promise more results there is certainly a risk of disappointment.

Training for a physical rehabilitation goal depends on tapping into the body’s natural ability to respond and adapt to an applied stimulus. Neuroplasticity is often linked to the need for “task specific, intensive and frequent” effort but it is not always easy to be exact in how this should be achieved. The intensive therapy centres face the same problems of goal setting as any other facility.

The need for adherence

Irrespective of the technology used and the effort of a supervising therapist to deliver a training programme, we need to deal with the fundamental issue of adherence. This might be the achilles heel of the present approach. As we all know, therapy takes time effort - and it's not a quick fix. Are clients going to be willing to repeat their rehabilitation “holidays” until they get meaningful results and will these results be sustainable over time?

Adherence is the foundation of everything in training and basically we humans are only likely to stick at something if certain conditions are met. There is no point designing a programme that the client cannot commit too. The basic conditions are

Is the training plan realistic? - The patient might have a particular functional improvement in mind but we have seen above how fraught with difficulty goal setting can be. Even in the best circumstances, the patient will need to have the time and resources to commit to this training otherwise they are not going to be successful. Is the training facility miles away and expensive to attend? If it is, the plan may not get off the ground.

Is it likely to be enjoyable? - Some people I know are “hard core” and are able to focus on a distant, abstract goal and keep going against the odds until they achieve it. This is typical of athletes and sports oriented people who are comfortable with working hard toward achieving a goal. The majority of us are not like that and have to work at finding the passion to keep going.

A realistic appraisal of the patients ability to work towards a goal might be important to how they can commit to a particular training plan. Do they work best in a one-to-one situation with a trainer or would they thrive in a group environment, for example? This group training energy can be great for some people but may not suit others.

Is the plan flexible? - There will be times when life gets in the way. No one wants to spend their life in therapy all the time. Does the plan allow for the unexpected?

Icone upper limb robot - designed to fit in a home environment.

Many patients would not unreasonably want therapy to be available close to home or even in home, be inexpensive, fun or challenging to participate in and of course be effective. It’s something of a chellenge.

Some technology is emerging to accomodate these needs but it is usual to expect not all to be met.

For example, the Icone (shown here) is a rehabilitation robot developed in Italy that works on the upper limbs and which has the great advantage of being easily transportable and usable at home, yet with remote supervision and monitoring. The adherence or otherwise to the exercises and the effectiveness of the exercise can be monitored via internet connectivity.

The unit has a great research effectiveness pedigree and is certainly less expensive than it’s hospital-based parent device (The MIT MANUS robot) but is still too expensive to see this in every home that needs it.

Technology and continuity of care

As an example, let’s see how deploying the Icone could support the evolution of a rehabilitation episode with a stroke example.

Evolution of an intervention

In the image above, we see a timeline that stretches from the acute phase in the early days following a stroke to a point years in the future. Initially the patient’s upper limb on the affected side is unresponsive and the treatment is taking place in a hospital.

At this stage, goal setting takes place. It may be a “negotiation” based on clinical experience and shaped by the attitudes and expectations of the patient. The Icone can be used to assess the patients with a battery of validated assessments. This technology can work with an unresponsive limb as the robot moves the arm safely through a sequence of movements. The patient receives feedback and encouragement from the robot’s display and is encouraged to imagine moving the arm as needed. The hope is that repeated practice can support recovery.

As the weeks go by, the patient is showing signs of recovery and the impaired limb is become responsive - some conscious active movement is now possible. The patient has now left hospital but is attending an outpatient clinic where technology-assisted rehabilitation continues. The battery of assessments is repeated and new goals are agreed.

We can now imagine two scenarios - one in which the patient receives continued rehabilitation at home or private clinic and a scenario in which little or now further rehabilitation takes place. The expectations for function will differ between these two scenarios. Continuing rehabilitation at home, shown with the blue trace, points to the possibility of further improvement. If no further rehabilitation effort is likely, this could lead to reducing potential for function shown with the red trace.

This points to the need for continuity of care. The problem we so often see is the lack of widely available support for rehabilitation in the community. Private providers and charities that aim to plug this gap do a great job but it is inevitable that a there will be insufficient resource to satisfy the need.

Conclusion

Patients of course want to get their lives back on track and many would naturally assume that if the worst happens at least the NHS will be there to help. The challenge of course is that rehabilitation following a catastrophic injury presents a lot of difficulties. Rehabilitation is not a quick fix.

The first difficulty is knowing what recovery is possible. We see people discharged from hospital and labelled as having “no potential for improvement.” This shapes patient expectations who may not know that this label is a reflection of fiscal priorities rather than clinical truth.

Goal setting in rehabilitation is difficult but at least we should expect it to be honest. Technology that assists both the clinician and the patient to develop shared goals should always be valuable.

We have seen charities and private therapy practices step in to support continuity of care for patients who cannot receive prolonged support from the NHS - this is to be welcomed and offers at least the opportunity to tap into the potential for recovery that would otherwise be lost. We pointed to a fundamental need for these programmes to be sustainable long enough to make an impact. Adherence to a programme is the first step in ensuring its success. Non of us can go to the gym just once and expect to remain fit. Those who attend exercise-based therapy programmes should understand that they may need to commit to repeat sessions to support their recovery and progress.

Technology that supports continuity of care - allowing support to be prolonged and take place at home with reduced costs is likely to be appreciated most by patients.