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How well do you recall what happened?

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For much of 2020 and, indeed, for some years to come we will have discussions and debates about the changes that happened as a result of  the coronavirus pandemic. There are already many sad and distressing stories but also some examples emerge where the changes in response to covid-19 had some benefit. 

Many years ago, family doctors did clinical visits by going to patient’s homes to see them. There was time to listen patiently and for the family to understand what the doctor explained and for them to contribute any observations that might help with diagnosis and treatment. So there was a degree of collaborative memory and maybe not much discussion of recall error or bias. 

Fast forward to 2021 and the demand for health services means that consultation times are short, lead times between making the appointment and getting to see the doctor are sometimes an extra cause of anxiety and an increasing number of consultations take place by phone or even video link. The consultations are often just one doctor with one patient and no witnesses, very confidential. 

Before the first UK lockdown just 10% of consultations were remote, during the first lockdown this rose to 80% and since then it has been 50%. In the future, there will be circumstances that require place-based in-person consultations but many appointments will be remote. It is important that they are effective. Patients don’t want the hassle of the journey and the cost of the car parking, unless it is really necessary for their healthcare. 

It is easy to imagine that if consultations are not recorded that both individuals, doctor and patient, have a different recollection of what was said and how it was intended to be interpreted. Doctors fear litigation. Can we help reduce this by having better ways to minimise recall error where self-report relies on patient recall?

Do we need to record consultations to avoid misunderstandings?

There’s increasing discussion of whether it is useful or even wise to record some consultations because of the misunderstandings that can arise. Some people say that patients forget up to 80% of the medical information given at these consultations. Is that not a huge waste of valuable time if the advice is not acted on as expected?

Lack of understanding is associated with patient dissatisfaction, poor adherence and reduced capacity for shared decision-making. Ranjana Srivastava suggests “the fog of treatment, coupled with all the elements of a life-threatening diagnosis makes every consultation a challenge to be heard and understood”. Sometimes, in the doctor’s assessment the consultation has gone very well but in fact the opposite occurred, Srivasta highlights an example where a family is told about a terminal illness. How do you empower and engage a patient who cannot tell you all the details – who gives an inadequate history, doesn’t absorb the information given or recall what has been said to them?

Will the stress and anxiety associated with a serious diagnosis mean that the listeners do not hear all that was said in the way it was hoped? Will recording the conversation make everyone feel more relaxed or more nervous or cautious about what they ask or say?

When are video consultations appropriate?

Trish Greenhalgh has produced guides for UK practitioners doing video consultations – this became necessary after covid-19 made social distancing a high public health priority. Video consultations allow all parties to stay in their preferred setting and remove a lot of the stress of getting to the right place at the right time. 

Interestingly, she notes that video consultations are appropriate for non-covid patients where trade-offs between attending in person and staying at home favours the latter. This can include routine chronic disease check-ups and giving counselling and support. For anxious patients, whether or not they actually have covid-19 this could be a good idea. 

Healthcare professionals have appreciated the effectiveness of video consultations throughout the pandemic, with many stating they are here to stay. They are also discovered which patients felt them to be beneficial, probably reflecting how this useful service was so under utilised prior to pandemic.

What about brain fog?

“Brain fog” is a term that is used for “mental fuzziness” where people feel their brain is working more slowly and experience difficulty with short-term memory and processing information. Everything takes longer, patients are more easily confused and overwhelmed. Brain fog has been associated with post-viral infection or after hospitalisation or intubation and now is widely associated with long covid. Brain fog might be a consequence of the drugs used or if other organs are not functioning properly. Yet it is not just old people or those with covid-19 that have such symptoms. 

The term is now more widely discussed since it was recognised as a symptom of long covid, even if not always a characteristic of covid-19 itself. Brain fog is very much a deterrent in consultation with the patient needing some form of backup or support (e.g. a digital diary displayed on the doctor’s secreen), indeed taking a good history is seen as a vital part of remote consultations. “Brain fog” is a colloquial term for a debilitating symptom and not fully understood within the medical profession – but they can expect to hear it more often while the world struggles to contain and prevent covid-19 and all that follows.

While having “brain fog” certainly won’t help with recalling other valuable details in medical consultations, we must recognise that it existed pre-covid  (e.g. with fibromyalgia) and will remain a problem until the mechanisms of long covid are more fully understood. 

Chronic illness and brain fog in place-based consultations

Travel  can be especially problematic for many people with chronic illnesses – it requires a lot of pacing and planning of daily activities – maybe more than some doctors might appreciate. Patient charities and blogs report that travel causes flare-ups of symptoms for many patients with chronic illness.  One patient observed

“For me being in a moving car flares my heart rate. My heart rate goes up to over 200+ bpm due to the movement of a car. So by the time I get to where I am going I am absolutely shattered, totally brain fogged and feel pretty bad overall.” 

A lot of chronically ill patients, for example myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), have an issue with post-exercise malaise (PEM) and flare ups after travelling – even locally.  A patient noted:

“Recall bias has happened to me before because of the journey to the appointments. By the time I have got to appointments, I am shattered, completely brain fogged and am barely functioning. So recall bias definitely then happens as I can barely function.”

Since 2020,  the increased number of video consultations has benefited some patients  with chronic illness because they haven’t had to travel to appointments.  

Such patients can now benefit from using TIYGA’s smart connected diary to ensure that recall issues are a thing of the past. Observations are recorded in near real time and ready for the consultation, whenever it happens. People will continue to attend place-based consultations for physical examinations so we cannot expect that al consultations will be by video. If the patient has brain fog as a symptom of their chronic illness, the problem of recalling their lived experience could still limit the effectiveness of the consultation even when no travel is necessary.  

Getting more value from consultations

If the benefit of the consultation relies on self-report and recall, we need to consider all the circumstances and choices around the consultation.

Sometimes the journey to the consultation can diminish the chances of success of the consultation. The healthcare professional can deliver their advice perfectly but if the patient is unable to give and receive information effectively, then this needs addressing.

Some brain fog is a symptom of conditions known prior to the coronavirus pandemic, some is a symptom of covid or long covid but in both cases it may be exacerbated by travel. When the “brain fog” problem is just caused by the journey, then the video consultation might make all the difference. 

However, if the person has “brain fog” as a consequence of infection or medication or some other cause, independent of the journey, then the best solution is a  of signs and symptoms soon after they occur and unaffected by brain fog. When this is presented in a structured way that can easily be interpreted by the healthcare professional  the discussion can be effective even if the patient has some brain fog at the time of the scheduled consultation. 

Time is your greatest asset (TIYGA), patient’s and professional’s time is too precious to waste on exchanges that could be more productive therefore it is crucial that everyone’s time is used to the maximum efficiency. It is not always best to simply schedule yet another consultation in a few weeks or months.  The impact of recall error has been demonstrated with a cost‐effectiveness analysis using costs of doctor visits and a regression example predicting number of doctor visits.

Life is too short, too precious and too important. Let us learn the lessons from covid and take forward the best practices into the new normal for healthcare delivery.

Twitter – @tiygahealth

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No higher risk of pregnancy complications in women with MS – study

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Women with multiple sclerosis (MS) may not be at a higher risk of pregnancy complications like gestational diabetes, emergency caesarean section or stillbirth than women who do not have the disease, new research has found.

However, the study did find that babies born to mothers with MS had a higher chance of being delivered by elective caesarean section (c-section) or induced delivery, and of being small for their age when compared to babies of women who did not have the disease.

“Women with multiple sclerosis may be understandably concerned about the risks of pregnancy,” says study author Professor Melinda Magyari, of the University of Copenhagen.

“While previous research has shown there is no higher risk of birth defects for babies born to women with MS, there are still a lot of unknowns around pregnancy and MS.

“We wanted to find out if women with MS are at risk for a variety of pregnancy complications.

“We found overall their pregnancies were just as healthy as those of the mothers without MS.”

The study involved 2,930 pregnant women with MS who were compared to 56,958 pregnant women without MS. All women gave birth between 1997 and 2016.

Researchers found no difference in risk of several pregnancy complications between women with MS and women without it.

No differences were found in risk of pre-eclampsia, gestational diabetes, placenta complications, emergency c-section, instrumental delivery, stillbirth, pre-term birth, congenital malformations or low Apgar score. Apgar score is a test of a newborn’s health, including measures like heart rate, reflexes and muscle tone immediately after birth.

Researchers did find that 401 of the 2,930 women with MS, or 14 per cent, had an elective c-section, compared to 4,402 of the 56, 958 women without MS, or eight per cent, who had an elective c-section.

After adjusting for other factors that could increase the likelihood of having an elective c-section, such as prior c-section and mother’s age, women with MS were 89 per cent more likely to have an elective c-section.

Researchers also found women with MS were 15 per cent more likely to have an induced delivery than women without the disease.

Also, women with MS were found to be 29 per cent more likely to have babies that were born small for their gestational age compared to women without MS.

Overall, 3.4 per cent of women with MS had babies small for their gestational age, compared to 2.8 per cent of women without MS.

“We think the reason more women with MS have babies by elective c-section or induced delivery may have to do with MS-related symptoms such as muscle weakness, spasticity or fatigue that might affect the birth,” Professor Magyari says.

“Any of these could make a mother more tired and lead to delivery complications that could prompt the clinician and woman to take extra precautions.”

Researchers also found that mothers with MS were 13 per cent less likely to give birth to babies with signs of being deprived of oxygen, or asphyxia.

Professor Magyari said the higher prevalence of elective c-sections among women with MS most likely explains the corresponding lower odds of asphyxia.

A limitation of the study is the lack of data on the mothers’ smoking, which could cause babies to be born small for their gestational age.

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Neuro physio

Community neurorehab gym continues to expand

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The West Berkshire Therapy Centre was established on the back of £145,000 worth of fundraising

A community therapy centre which enables neuro patients access to the physio-led exercise which can support their recovery continues to expand in response to demand for its services.

West Berkshire Therapy Centre was opened in 2014 to bridge the gap in existing community resources, and initially opened for 20 hours a week with ten items of equipment.

Since that time, the Thatcham centre has expanded into premises twice the size of its initial home, and now has 17 items of equipment which clients can access 35 hours each week.

While the centre has been forced to close during lockdown periods, the investment in its offering has continued, with a further £17,500 being spent to upgrade equipment.

In addition to its regular clientele of around 260 people, around 200 more will be referred to the centre from the Berkshire Long COVID Integrated Service, led by Dr Deepak Ravindran, who has worked closely with the centre for several years.

As well as the anecdotal evidence from clients who attest the positive effect West Berkshire Therapy Centre has, the centre’s work has been proven to improve client mobility by an average of ten per cent, psychological outlook by 15 per cent and weight loss by three per cent.

All clients are assessed by the centre’s physio before being prescribed an individual exercise programme. The centre prides itself on its client-centred approach and some of the equipment in the gym has been designed and built specifically in response to what clients said were important to them.

West Berkshire Therapy Centre was created by the West Berkshire Neurological Alliance, a group of 23 local neuro charities, which recognised the need for greater specialist provision for people living with neurological conditions in the area.

John Holt was instrumental to the creation of both the Alliance and the Centre. Having supported his wife in living with MS for over 40 years, he took the lead on ensuring greater provision and support was there for those who needed it.

“I’m not from a medical background, I’m a food technologist, and while I was chair of a trade association during my career, I was used to working with competitors and business enemies, that was just what happened for the greater good of us all,” he says.

“So I was rather shocked when I got involved with the local voluntary sector and found that wasn’t the case. I was very proactive in all of our charities working together as I know the importance of working as one alliance.

“People who were living with neurological conditions were often having to fend for themselves when it came to community rehab, and that’s why we wanted to create the West Berkshire Therapy Centre.”

Having been established on the back of £145,000 in fundraising, five years later the demand for its services was such it had to expand into larger premises and invest in more equipment.

The centre – which is funded by voluntary contributions for sessions and through fundraising – now has eight part-time staff and a core of volunteers to support clients with whatever rehabilitation issues they have.

While most clients have neurological conditions – including stroke, Parkinson’s, MS and Post-Polio Syndrome – the centre has broadened its reach to include large numbers of people with arthritis, heart and lung conditions, sight impairments as well as amputees.

“We’re completely pan-disability and will support anyone who needs us. Our clients talk to us and we listen and adapt,” says John.

“I think many clients come to us because we are a safe place for them and they’re among people who understand the challenges they face.

“It is very important that we talk about things openly. For example, we talk about how hard it is when you can’t get to the bathroom in time and you wet yourself.

“When you face issues like that, it can be the start of a spiral downhill, you might then stop going to work or stop leaving the house, but we share these kinds of things.

“By having this interaction, it becomes a place people aren’t afraid to open up.”

With the centre having been closed for much of the past year, John and the team are ready to welcome back regular and new clients, including the many who are recovering from Long COVID.

“Many of our clients won’t have exercised for several months, but we hear very often that people have waited 20 years for a centre like this, so a few months hasn’t been long in comparison,” says John.

“But we are very much looking forward to re-opening and supporting our clients in regaining any progress and fitness they may have lost. Hopefully we are on the right track now after three lockdowns and clients can come back to us regularly.

“Long COVID is a new condition for us, as it has only come into being in the past few months, but we are ready to support people with their symptoms and in them using exercise as part of their recovery.”

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Brain tech company secures funding to increase support post COVID-19

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CBS Health will help clinicians utilise more digital services

An online brain assessment platform has secured funding to enable its work in telehealth to continue to support people as the world emerges from the COVID-19 pandemic.

Cambridge Brain Sciences (CBS) is planning to expand its operation through a funding round from Canadian Shield Capital, a Toronto-based private equity investment firm, closely aligned to Hatch, a global engineering consultancy.

The investment will allow Candian-based CBS to further its work in digital health, especially around mental health, and respond to the need for accurate and reliable quantified measures of brain function and brain health – hailed as being essential to so many people who have suffered psychologically from the effects of COVID-19.

The funds will allow CBS to grow its sales and customer support teams rapidly, which will enable it to roll out its flagship product, CBS Health, further.

It will also enable it to expand on CBS Health features to help continue to refine and develop its cognitive care platform for healthcare professionals treating the growing mental health, brain injury and ageing patient populations.

The COVID-19 global pandemic has seen many healthcare practitioners to adopt platforms such as CBS Health to manage patients remotely.

As a result of lockdowns and ‘stay at home’ guidance, there has been exponential growth in patients seeking treatment for mental health conditions brought on, or exacerbated by, the pandemic, as well as individuals recovering from COVID-19 suffering with longer term neurological symptoms.

CBS Health has also grown as a result, and offers a web-based platform or integration which allows healthcare professionals to administer the CBS tasks standalone or alongside other established and validated complementary assessments (such as the PHQ-9, a standard scale for assessing the severity of depressive symptoms).

Assessments can be combined into a single session and administered in person or remotely via email—an option from which clinicians have benefitted greatly throughout the COVID-19 global pandemic.

The investment also contemplates further collaboration between CBS and Hatch, building upon an earlier successful pilot for a dedicated CBS platform to address corporate workplace mental health and safety at large scale industrial operations, construction sites and infrastructure projects.

“CBS is excited to be closing this round of financing which builds upon a long-term relationship with Canadian Shield and an earlier successful pilot with Hatch,” says Marc Lipton, president and CEO of Cambridge Brain Sciences.

“The funding will allow us to further accelerate the growth of our core CBS Health product especially amongst mental health practitioners, as well as to strategically explore, with Hatch, large corporate applications for workplace mental health and safety.”

“CBS brings many years of academic discipline and rigorous digital measurement of cognitive health, with applications in mental health, brain injury recovery, healthy ageing, and soon workplace safety,” says Andrew W. Dunn, managing partner at Canadian Shield Capital.

“The growing awareness of, and attention to, mental health conditions and CBS’ engaging and efficient approach gives it enormous runway.”

James Marzocca, global managing director for project delivery at Hatch, adds: “We see great potential to apply CBS testing as a non-invasive diagnostic to assess fitness for duty for individuals reporting to worksites where mental alertness is essential for their own safety and the safety of others.”

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