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Tackling the self-report shortfall



How new technology could revolutionise the way patients self-report their symptoms – improving outcomes and research capabilities in neuro-rehab and other fields.

‘Patient-centred’ has become a well-worn phrase in neuro-rehab in recent years. In fact, so often is it mentioned by care and therapy providers, that it is starting to mean different things to different people, running the risk of becoming meaningless.

Of course, in healthcare the patient should, indeed, be at the heart of everything. If self-report mechanisms are flawed, however, can we really say that this is the case?

A new platform is addressing this by changing how patients are able to self-report their symptoms, adopting a real-time approach and presenting new possibilities for rehab teams.

Self-reporting in neuro-rehab can be vitally important. Without it, multidisciplinary teams (MDTs) may struggle to accurately assess a patient’s pain levels or discover key aspects of their wellbeing. It can be particularly challenging in brain conditions, however; with behavioural changes, fatigue and memory problems among several factors that might affect an individual’s ability to relay how they are feeling.

With stroke diagnosis, for instance, studies have found that while self-reporting ‘may be a useful screening tool to identify potential stroke disease in prospective studies, it is not accurate enough on its own to confirm cases.’ (Woodfield et al, 2015).

Furthermore, a 2010 study into self-reported cognitive symptoms following mild traumatic brain injury in US veterans found that ‘self-reported cognitive functioning is significantly related to psychiatric symptoms and clinicians should appreciate this limitation’ (Spencer et al, 2010).

A new platform has been borne out of recognition of such challenges, harnessing digital tech to allow real- time and accurate self-reporting.

It could help to improve the way the progress of neuro-rehab patients is tracked and the ease at which vital neurological research can be carried out.

Tiyga, an acronym for Time Is Your Greatest Asset, is a cloud-based system that enables clinicians to capture patient diary data and monitor progress of symptoms over days, weeks and months – via an easy-to-use application.

So far it has successfully been used by the Arthritis Support Group (MSK) and the Pelvic Pain Support Network, amongst others.

The platform helps to bring patient knowledge to healthcare professionals in a timely way. The aim is for healthcare professionals to receive information in near-real time, allowing them to use their knowledge and experience to facilitate problem-solving.

The Tiyga dashboard allows each healthcare professional to create app accounts which are tailored to their patient. These can be configured remotely by clinicians so that their patients are able to report symptoms experienced at any time of day.

They also help to encourage conversations in a language that is relatable and understandable to a greater number of patients.

With all of the data managed in the UK, clinicians can customise the platform for each individual patient, who can then, in turn, report using a bespoke rating.

The option to add free text, explaining in their own words anything else that they consider to be relevant, allows the patient to feel in control and not controlled by a disease.

Neuro patients may have less energy or cognitive ability to navigate complex apps or forms, so Tiyga is specifically designed for ease of use, including for infrequent users of technology.

The patient needs only 20-30 seconds to report how they feel without having the burden of remembering all the details for the next consultation.

The reports are easily shared with members of an MDT, removing the need for the patient to repeat themselves.

As a result, clinicians are able to view a unique, visual diary pattern that helps them to establish timelines and summarise statistics over different time periods.

MDTs spend a high proportion of consultation time on discussing the history of a patient, and the process can be further extended depending on how well the patient recalls their experience or time since the last consultation.

Clinicians can only do their best with information given to them and cannot manage something they are unable to measure – or unaware of.

Real-time input can enhance health outcomes, especially in a neuro-rehab scenario where it isn’t simply a one-off situation involving taking a pill and reporting back at a later date with the results.

This remote connection to professionals with a full understanding of the best treatment options, gives more confidence, helps to reduce anxieties and enables the patient with pre-existing or newly emerging conditions, to respond to the challenges they face.

Experiences such as a migraine flare-up, for example, where there is a sudden and extremely distressing intensity at a certain period of time, may be easier to relay back to physicians accurately at a later date.

Similarly other symptoms that are subjective, such as fatigue or brain fog, may be more difficult to measure in a traditional way.

In these situations, where symptoms vary over time, self-reporting through the app helps to mitigate this obstacle and reduce the potential for recall error that could affect a number of neuro patients.

Katrina Delargy, managing director of Tiyga Health, tells NR Times: “There are a number of symptoms that normally rely on the patient telling the doctor how they have been since their previous appointment.

One of the problems in the neuro area is, if the disease affects somebody’s memory, then it is especially hard for them to remember clearly to give the doctor a clear picture of exactly what has happened.

“Remembering the exact detail is why potential recall error is something that would affect a number of neuro patients.

“This could be used by MDTs, or as a tool as part of clinical research in gathering the data needed from the patient cohort.”

It could also help to capture data from patients during periods when healthcare resources are most stretched such as during the winter, or under the ongoing challenges of COVID-19.

In the case of long Covid, where lingering symptoms such as brain fog and the deterioration of cognitive functioning can last over six months, CT scans may initially look normal or show only slight abnormalities.

Allowing patients’ real-time feedback on these symptoms that are not yet calibrated on medical devices, may help experts identify and explain patterns.

At a time where remote appointments are the norm, self-reporting is another digital tool helping rehab teams to better engage with their patients.

In assisting those who require help re-learning to walk or swallow, for example, real-time, remote feedback could prove invaluable.

While Tiyga may not be the definitive answer to every aspect of the self-report challenge neuro-rehab, it certainly shows lots of promise in delivering truly patient-centred care. NR Times will be monitoring its development in the coming months as healthcare’s digital revolution accelerates.

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The Greater Manchester Neuro Alliance (GMNA)

The GMNA is one of several organisations piloting the Tiyga platform. Here its chair, Deb Troops, explains why she believes it is a much-needed addition to the neuro-rehab professionals’ toolkit.

For us at the GMNA, one of the most exciting things about the platform is that, not only is it extremely clear in its approach to the patient or the client, it also offers the opportunity for the people supporting them to learn how to use it and understand what it’s actually for.

In terms of professional learning tools, it provides data that can be shared – and be part of their personal development.

In the past we have had lots of pieces of paper but nothing with a joined up approach. An app which enables us to share that data with clinicians, social workers and case managers, really does enable a person-centred approach.

When people go to a clinic appointment, instead of having to remember or turn up with diaries and loads of bits of paper, the clinician sitting opposite them can actually have a record that that person has shared with them for the last six or twelve months.

That’s really important because so many times a vulnerable person or someone with cognitive problems can turn up to a clinic appointment and they might sit and become agitated or frustrated if they were to forget things.

The app could change everything when it comes to patient care. Before they even sit down with a clinician or even if they are not well enough to attend, the clinician would know how a person was feeling and could change or recommend new medication.

If we could do that for people living with long-term health conditions like ME or brain injuries like Parkinson’s, imagine what a wealth of information we can share right across the board.

It puts the patient in control. I am really excited about the possibilities that this could present.

It absolutely puts the patient at the centre, so often the client is never asked for their input to MDT’s, clinical meetings and assessments. Why not? Because they are the people who experience what is happening on a daily basis. 


Smoking linked to stroke in new study 



Guido Falcone, assistant professor of neurology at Yale School of Medicine, was the senior author of the study

Adults who smoke, or are genetically predisposed to smoking behaviours, are more likely to experience a subarachnoid haemorrhage (SAH), new research has revealed.

The study found that while smokers are at a higher risk of SAH, that rises to over 60 per cent among those with genetic variants that predispose them to smoking.

The research, published in Stroke, a journal of the American Stroke Association, establishes a link between smoking and the risk of SAH for the first time.

While it has been proven in other types of stroke, this is pioneering research in its link with SAH – a type of stroke that occurs when a blood vessel on the surface of the brain ruptures and bleeds into the space between the brain and the skull.

Results of the study show:

  • the relationship between smoking and SAH risk appeared to be linear, with those who smoked half a pack to 20 packs of cigarettes a year having a 27% increased risk;
  • heavier smokers, those who smoked more than 40 packs of cigarettes a year, were nearly three times more at risk for SAH than those who did not smoke; and,
  • people who were genetically predisposed to smoking behaviours were at a 63% greater risk for SAH.

Researchers also stated that while their findings suggest a more pronounced and harmful effect of smoking in women and adults with high blood pressure, they believe larger studies are needed to confirm these results.

“Previous studies have shown that smoking is associated with higher risks of SAH, yet it has been unclear if smoking or another confounding condition such as high blood pressure was a cause of the stroke,” says senior study author Guido Falcone, assistant professor of neurology at Yale School of Medicine.

“A definitive, causal relationship between smoking and the risk of SAH has not been previously established as it has been with other types of stroke.”

During the study, researchers analysed the genetic data of 408,609 people from the UK Biobank, aged 40 to 69 at time of recruitment (2006-2010).

Incidence of SAH was collected throughout the study, with a total of 904 SAHs occurring by the end of the study.

Researchers developed a genetic risk scoring system that included genetic markers associated with risk of smoking and tracked smoking behaviour data, which was collected at the time each participant was recruited.

“Our results provide justification for future studies to focus on evaluating whether information on genetic variants leading to smoking can be used to better identify people at high risk of having one of these types of brain haemorrhages,” said lead study author Julian N. Acosta, neurologist, postdoctoral research fellow at the Yale School of Medicine.

“These targeted populations might benefit from aggressive diagnostic interventions that could lead to early identification of the aneurysms that cause this serious type of bleeding stroke.”

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New campaign to reduce stroke risk launched on Stroke Prevention Day 



Almost nine out of ten strokes are associated with modifiable risk factors

A 12-week campaign is being launched today – Stroke Prevention Day – to help raise awareness of how the risk of stroke can be reduced. 

The campaign encourages people to make one small positive change to their lifestyle to reduce the possibility of stroke, which is the fourth highest cause of death in the UK. 

According to the Stroke Association UK, 89 per cent – almost 9 in 10 – strokes are associated with modifiable risk factors in the Western countries, including lifestyle elements that can be changed to reduce risk, such as weight, diet and blood pressure. 

New research commissioned by the charity, which is leading the campaign, has also revealed: 

  •  Only 1 in 20 (6%) UK adults think they’re at high risk of a stroke, despite the fact that the global lifetime risk of stroke from the age of 25 years onward was approximately 25% among both men and women
  • Almost half (47%) of the country don’t know that high blood pressure is a top risk factor for stroke 
  • 3 in 4 people (73%) said that they have had no information about stroke reduction recently, which rises to over 4 in 5 (85%) of over-65s, who are most at risk of having a stroke.

Blood pressure is the biggest cause of stroke, with 55 per cent of stroke patients having hypertension when they experience their stroke. Further, around 1 in 4 adults from 55 years of age will develop AFib. 

“While these numbers are concerning, they also demonstrate that with increased awareness, we can all take simple steps to reduce our risk,” says Charlie Fox, sales director of OMRON Healthcare, who are supporting the Stroke Association campaign alongside Patients Know Best. 

“As an incredibly important risk factor for stroke, having a healthy heart should be a top priority and remain front of mind.”

AFib can be asymptomatic and may not be present during a medical appointment as episodes can be occasional, which means it is often left undiagnosed. 

But given its seriousness, those who may be at risk should routinely record electrocardiogram (ECG) measurements, according to current medical guidelines. 

Through doing so at home will enable patients to become more in control of their health, with OMRON being one of the companies developing the technology to support them in doing so. 

“The public wants and needs to be more in control of its health, which is why we create products and services that are suitable for use at home as part of our Going for Zero strokes pledge,” adds Fox. 

“OMRON Complete, for example, is an upcoming, clinically validated home blood pressure monitor with a built-in ECG which can help detect AFib which we’re excited to launch in the coming months. 

“It is our hope that through this awareness programme and by equipping the public with the tools it needs, we can make having an empowered and informed lifestyle the new normal.”

People with a Patients Know Best (PKB) Personal Health Record can also log readings to get a more complete picture of their health journey. This allows them to look back with ease and share readings with clinical teams and caregivers in a safe, secure and meaningful way.

Fox concludes: “Your blood pressure provides important health insights. Monitoring it regularly alongside your ECG readings empowers you with knowledge, helps you act sooner, and can even save your life”.

More information about the campaign and how you can make your one small change can be found here:

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What are the IDDSI Levels and why do they matter?



Wiltshire Farm Foods takes you through the importance of the IDDSI Levels

Sponsored feature

Dysphagia, more commonly known as swallowing difficulties, can be prevalent amongst those in neuro rehabilitation. For those in recovery, understanding how their swallowing has been affected, what solutions are available and which nutritional, delicious and above all, safe, meals they should be eating, is of paramount importance.   

When someone starts to experience dysphagia, they are most commonly seen by a speech and language therapist (SLT) and a dietitian. Together, they will create a plan for the management of dysphagia. A speech and language therapist will explain in detail the importance of texture modified food and drinks and will work with you to carefully understand the right texture modification for you. 

What is IDDSI?

This is where IDDSI can help you understand your recommended texture modified diet in more detail.  IDDSI stands for International Dysphagia Diet Standardisation Initiative. This is a committee that have developed a framework of 8 levels which provide common terminology to describe food textures and the thickness of liquids for those living with dysphagia.

The purpose of IDDSI is to create standardised terminology and descriptors for texture modified foods and liquids that can be applied and understood globally – across all cultures and age spans.

Before the introduction of IDDSI, there were national descriptors in the UK which were formed by opinion rather than international standards. Having different terminology, categories and definitions in different countries caused some instances of food being of incorrect consistency. The IDDSI framework was fully adopted by food manufacturers and healthcare settings in the UK in March 2019.

The framework consists of levels for both drinks (liquids) and foods, some of which overlap as you can see in the image above. Here is a breakdown of each category in the IDDSI FOODS framework. 

Level 3 – Liquidised/Moderately Thick

  • Can be drunk from a cup
  • Does not retain its shape
  • Can be eaten with a spoon, not a fork
  • Smooth texture with no ‘bits’

Level 4 – Pureed/Extremely Thick

  • Usually eaten with a spoon (a fork is possible)
  • Does not flow easily
  • Does not require chewing
  • Retains its shape
  • No lumps
  • Not a sticky consistency

Level 5 – Minced

  • Can be eaten with either a fork or a spoon
  • Can be scooped and shaped
  • Small lumps are visible, but are easy to squash with tongue
  • Biting is not required
  • Minimal chewing required

Level 6 – Soft & Bite-Sized

  • Can be eaten with fork or spoon
  • Can be mashed/broken down with pressure
  • Chewing is required before swallowing

How can I check my meals are made to IDDSI standards?

You can check to see whether your food is compliant with the IDDSI Framework by watching these IDDSI Food Test videos.

To discover a Softer Foods range which is IDDSI compliant and created with your patients’ needs in mind, register here for the opportunity to try some complimentary meals from Wiltshire Farm Foods.

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