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Leading the remote resistance

Andrew Mernin reports on an emerging technology aiming to revolutionise how rehab professionals work together on patient goals.

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COVID-19 could spark a cultural renaissance, according to some in the art world.

Artists thrive on isolation, BBC arts chief Jonty Claypole points out, and therefore an explosion of new work could emerge from current conditions.

The spirit of renaissance – meaning ‘rebirth’ in French – might also course through our workplaces.

Kitchen tables, spare bedrooms and garden sheds are among the many residential quarters to have been commandeered by home workers recently.

And while it hasn’t been easy for many to adjust, the change has exposed some of the inefficiencies and excesses of traditional ways of working.

In the neuro-rehab field this could lead to an irreversible shift in how things are done, says Dr Penny Trayner, a paediatric clinical neuropsychologist. “COVID-19 could change the way we work forever.

We are already seeing organisations doing a ‘factory reset’ on how they do things, founded on using new skills and technology.

“It’s pretty difficult to justify not doing things in the most efficient way possible. Once the restrictions from the pandemic are lifted, we will no doubt find that going back to the old ways of working is much less efficient than the video conferencing, apps and technology that we have been using in the meantime.”

Penny and her colleagues at Clinical Neuropsychology Services have long been working remotely to deliver assessments and interventions for young people across the UK.

But they also have a stake in the ensuing race towards new ways of working.

For they are the pioneers behind Goal Manager, a cloud-based software platform for rehabilitation goal setting for multidisciplinary teams (MDTs) in remote locations.

It acts as a data manager and enables MDT assessment, goal planning, review, communication and evaluation, with all necessary gold-standard processes supported, and all accessible remotely from anywhere.

“Goal Manager was developed directly from clinical practice experiences, ‘by clinicians for clinicians’, and so it has an evidence base behind all of the components built into the software, which cover all of the key practices in team goal setting.

“The idea developed from my experiences of working remotely while running a community-based neuropsychology service for the past 11 years. This style of working is something we’re very familiar with and, in fact, in neurorehabilitation generally, many are used to working in this manner due to the scarcity of services in the UK.”

Although borne out of brain injury services, the platform incorporates the World Health Organisation’s International classification of functioning (ICF) – a global framework that addresses any physical condition.

It can therefore be used in any health service context where goal-setting is relevant, for example in stroke, spinal injury and cardiac services.

Penny says: “Remote working is a wave that’s been coming towards all healthcare services for a long time, but there have been barriers to people implementing it, in terms of time and infrastructure amongst other things.

“Those barriers are now being overcome, because everyone is invested in finding ways to work together remotely. We’ve already addressed a lot of these barriers in creating Goal Manager and it’s ready to go for any rehab teams that need it.”

Penny’s day job, delivering neuropsychology services to children and young people in the community nationwide, requires being plugged into MDTs all over the country.

Goal Manager emerged from this necessity.

“Most neuro-rehab services in the community involve people working remotely. This is generally the lay of the land for independent services across the UK.

“The software was developed from within our service to ensure that we could consistently provide best practice, as well as reduce time and costs associated with goal setting, by automating the processes involved.

“As more of my colleagues took an interest and want to use it for their own services, it took on a life of its own and we launched it for commercial use in 2019.”

In designing the app, Penny recognised that goal setting was a vital, but often extremely time-consuming, element of rehab.

For example, tracking the activity of teams, they found that one service user, over six months, required an MDT of four people a total of 70.5 hours to complete goal setting activities.

This excluded the time taken to share progress between meetings, and time taken to travel to different locations to meet.

“Spending these hours on goal setting takes away valuable time that could be better spent on clinical work,” Penny says.

Goal setting is crucial in acquired brain injury (ABI) rehabilitation for collaboration within MDTs, motivating service users and tracking progress.

But, despite the extensive evidence base, effective goal setting across services is still inconsistent.

Goal Manager team members Dr Penny Trayner (left) and Merryn Dowson.

Goal Manager aims to address this challenge. It compiles relevant data from assessments which then form the foundations for goals.

Goals are then set using of Goal Attainment Scaling (GAS), a tool which is widely used in rehabilitation, but can be complicated to use in practice.

SMART objectives towards completing each goal can then be set, so that the contribution of each member of the team toward meeting these goals is clearly laid out.

The platform was initially tested in an independent practice focused on brain injury in young people. It led to a 43 per cent reduction in time spent on goal setting.

These findings were shared at the conference for the neuro- rehab special interest group at a World Federation for Neurorehabilitation event last year, catalysing demand for the system in large in and outpatient services.

In the UK, Goal Manager also has potential to support the aims of the Rehabilitation Prescription, which sets out the services that an individual should be receiving following a brain injury.

This was acknowledged by the UK Acquired Brain Injury Forum (UKABIF) at the end of last year, when Goal Manager was awarded their inaugural Mike Barnes Award for Innovation.

Penny says: “Cutting time spent on goal setting reduces costs and gives more time to spend on actually achieving the goals.

“Currently, services record their goals in different formats using different documents, maybe on spreadsheets, or maybe on paper, and shared over email, or at physical meetings.

“There is no consistency and it can be challenging for clinicians to pull all of this together and make sense of the data, as well as service users.

“We’ve put everything onto one platform, streamlining the processes involved and enabling progress and output reports to be produced that consolidate all the goal setting data on one document.

“Up until recent weeks, a lot of teams have been dependent on having physical meetings to discuss and coordinate their activity.

“Goal Manager provides the infrastructure to support a virtual version of what they’ve already been doing. All of its components are tools that clinicians are familiar with and using – and which are linked to best patient outcomes.

“But we’re also aware that time and other pressures can limit professionals’ capabilities in making best use of these tools.

“So we’ve simplified activities, providing a one- stop-shop for best practice in goal management that allows teams to get on with what they’re doing without having to worry about administrative demands.”

Beyond the UK, the platform is being rolled out in the US as part of community rehab services and professional training for physiotherapy students.

Impending developments include a patient-portal, which will support service users in taking ownership of their goals.

“Patients can already log into Goal Manager, but we want to create a more bespoke portal for them, to make their goals more meaningful and accessible and to give them more input into the narrative of their goals.

“Just the other day I had a 11-year-old patient, who accesses their data through the existing platform, telling his team ‘it’s my life and it is important to me that I can use the app and see my own data’. And he’s absolutely right.”

A research dashboard that enables researchers to easily analyse the vast bank of anonymous data generated by its users is also in development.

By making the platform free to use for educators and researchers, it is hoped that it proves an impetus for a much-needed surge in research into outcomes in complex neurological conditions.

Meanwhile, Penny and her team aim to provide technological guidance to rehab professionals struggling to adapt to the remote working renaissance.

“Many healthcare professionals, and people in general, perhaps don’t feel confident using technology and have just not had to use it that much in their work in the past.

“We are running a series of webinars and training events about goal setting and making the best use of technology in rehab.

“The current changes we’re all going through are something we are well prepared for; we’ve got all the infrastructure in place to support teams to carry on doing their work. So we want people to know that we’re here to help.”

For more on Goal Manager visit www.goalmanager.co.uk

 

References:

Gauggel, S & Hoop, M. (2004). Goal-setting as a motivational technique for neurorehabilitation. Handbook of Motivational Counselling, 439.

Plant, S. E., Tyson, S. F., Kirk, S., & Parsons, J. (2016). What are the barriers and facilitators to goalsetting during rehabilitation for stroke and other acquired brain injuries? A systematic review and meta-synthesis. Clinical rehabilitation, 30(9), 921-930.

Tucker, P. (2015). Goal setting and goal attainment scaling in child neuropsychological rehabilitation. In Reed, J., Byard, K., & Fine, H. (Eds.), Neuropsychological rehabilitation of childhood brain injury (pp. 151–170). London: Palgrave Macmillan.

 

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Repeated head injuries linked to depression – study

Repeated head impacts may be associated with depression symptoms and worse cognitive function later in life, new research suggests.

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It’s well established that a traumatic brain injury (TBI) can cause memory and cognitive problems, as well as depression, but now, researchers have looked at the consequences of repetitive head impacts.

They found that people exposed to repetitive head impacts may be more likely to experience difficulties with cognitive functioning and depression years later.

The researchers analysed data from the Brain health Registry on 13,000 adults, five per cent of whom reported having had repetitive head impacts through contact sports, abuse or military service.

They were asked about depressive symptoms and completed cognitive tests.

The paper, by researchers at Boston University and the University of California, San Francisco, reveals that participants who’d had repetitive head impacts and TBI reported greater depression symptoms than those who hadn’t.

Repetitive head injuries were a stronger predictor of depression than TBI, and those who had a history of repetitive head impacts and TBI with loss of consciousness reported the most depressive symptoms.

“The findings underscore that repetitive hits to the head, such as those from contact sport participation or physical abuse, might be associated with later-life symptoms of depression.

“It should be made clear that this association is likely to be dependent on the dose or duration of repetitive head impacts and this information was not available for this study,” said Michael Alosco, associate professor of neurology at BU School of Medicine (BUSM).

Those who’d experienced repetitive head impacts or TBI also performed worse in some of the cognitive tests.

“It should be noted that not all people with a history of repetitive hits to the head will develop later-life problems with cognitive functioning and depression,” says Study author Robert Stern, professor of neurology, neurosurgery and anatomy & neurobiology at BUSM.

“However, results from this study provide further evidence that exposure to repetitive head impacts, such as through the routine play of tackle football, plays an important role in the development in these later-life cognitive and emotional problems.”

The researchers point out, however, that one limitation of the research is that researchers didn’t have data on the extent of participants’ injuries.

Last year, BUSM researchers found that longer someone was exposed to tackle football, the higher the risk of developing the degenerative brain disease chronic traumatic encephalopathy.

For every year of exposure to the sport, footballers had a 30 per cent increased chance of having the disease.

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City dwellers “more likely to die in hospital” after stroke – US study

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Compared to those living in urban areas, stroke patients treated at rural hospitals were one third less likely to undergo a procedure to remove a blood clot that caused the stroke and were more likely to die of stroke before leaving the hospital.

Researchers examined national data on almost 800,000 adults hospitalised after a stroke between 2012 and 2017.

In their paper, published in the American Stroke Association’s Stroke journal, the researchers warn that this urban-rural divide may be getting worse. This gap, the paper states, could be caused by the slower take-up of newer treatments and technologies, and because rural hospitals are less well-resourced and have poorer access to specialist care. Rural hospitals may also be more likely to lack specialised clinical support, such as dedicated stroke units.

Other causes for poorer stroke care could be a lack of clinical expertise in urban areas, due to difficulties attracting and retaining experienced staff, and poorer access to emergency services and longer responses to emergency calls due to distance.

“The lack of access to specialists is often a limiting factor in adequate care for rural stroke patients, and in this case, that could mean a neurologist to guide the initial care, an interventional neurologist or radiologist to do a procedure, or having a neurosurgeon available for backup in case of any complications,” said Gmerice Hammond, author of the study and a cardiology fellow at Washington University School of Medicine.

“Clinicians need to work to improve access to high-quality stroke care for individuals in rural areas. That means partnerships between hospitals for rapid transfer, as well as telehealth when appropriate. And clinical leaders and policymakers should prioritize improving access, care and outcomes for stroke in rural communities.”

The study had some limitations, including a lack of data on the severity of patients’ strokes, or factors that would determine whether a patient received advanced therapies, sich as the size of the clot and where it is located.

Karen Joynt Maddox, senior author of the study and assistant professor of medicine at Washington University School of Medicine, calls the differences in care, and the lack of improvement over the five-year period, ‘striking’.

“Future studies using more detailed clinical data will be important to follow up on our findings and to determine why patients in rural areas aren’t receiving advanced therapies. Is it because their stroke severity is different? Or because delays in getting to the hospital meant they weren’t eligible by the time they arrived?

“Those questions can’t be answered with administrative data, but they’re very important to look into so that we can develop effective solutions.”

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One charity’s challenging move to online group sessions

Since lockdown began in March, many people recovering from brain injuries have had to adapt to remote sessions with health workers.

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But it’s not just outpatients that have seen a change. One neuropsychologist in York is trying to sustain momentum with her support group, but navigating the new online world with patients has brought its challenges.

Just before lockdown, Diana Toseland, consultant clinical neuropsychologist, was celebrating. Her charity, Café Neuro York, became officially registered. Café Neuro is a social support network that allows people with long term neurological conditions in York to learn new skills, help others and learning to be mindful, after they’re discharged from health services.

Group members were meeting face-to-face for morning and evening meetings, and once a month on Thursday evenings there was an interactive presentation for members to enjoy. When lockdown began, Toseland wanted to continue her twice-weekly sessions online.

But adjusting hasn’t been easy – Toseland had built up a loyal user base, but sessions were very much based offline. Adjusting hasn’t been easy.

“People need this in York. People with a neurological condition need ongoing support,” Toseland says. “People with brain injuries found it helpful to come along to meet people without having to explain – they can just be who they are. It’s about what people can do, not about their condition or disability.

Since lockdown, Toseland has been struggling to know how to support people.

“I’ve got up to speed with Zoom. This week we had six people call in, but their difficulties are quite profound and they’re finding it hard to get onto Zoom. Some call in late because they forget or find it difficult, others call in with help from families.”

Toseland has found there are many technical difficulties to overcome before the sessions can begin.

“You need so many things – good internet connection, distraction-free environment, working microphones and speakers.

“One woman managed to set it up herself, her career before the injury was IT, but then she didn’t have sound. Then she tried headphones, which worked, but then she took them off and couldn’t get the microphone on the computer to work without the headphones – she was the most successful in that meeting.

“Another has poor signal so she has to sit under a tree in her garden, which means she can only do it when the weather’s good.”

Once the call is up and running, Toseland says some members find it difficult to navigate the conversation, which has entirely different unspoken social rules than offline conversations.

“They’ve found it difficult because you can’t have two people having a conversation, it’s got to be one person at a time, which requires intense concentration. People can’t sustain that level of attention long enough to fully participate in the conversation.

“Some go quiet, it leaves people with headaches, it’s fraught with disaster. They might dominate the conversation and not pick up on cues; one finds it’s too much stimulation, so she closes her eyes.”

But Toseland hopes to continue the groups, as when it does work, it works well.

“On the other hand, for those who have joined it, they’ve used it as a bit of a lifeline.”

But Toseland is looking forward to getting meetings back into the real world. She’s been runnin Café Neuro for over a year and a half, and she’s seen more progress in some members than they ever made coming to her clinical practice.

“It’s made a difference in ways I couldn’t have predicted, and an impact wider and quicker than I could’ve possibly hoped for,” she says.

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