Tele-epilepsy and remote seizure monitoring (Netherlands)

Because epilepsy is such a distressing condition there will surely be a crock of gold waiting for whoever can produce a device that can reliably monitor the brain activity of people with epilepsy when at home, especially when asleep. Here is the latest effort from researchers in The Netherlands which, they say, has a (good) 90% success rate: Tele-Epilepsy and Remote Seizure Monitoring in the Netherlands Shimmer Research. (Whoever coined the term ‘tele-epilepsy’ should be sent to the naughty step until they say sorry!) Heads-up thanks to Toni Bunting.

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Comments

  1. UpNorthAndToTheRight

    Does anyone have experience of distance monitoring people with epilepsy?
    I ask because I have seen monitoring devices working really well within the same property (immediate response) but I cannot see how knowing someone is seizing and informing anybody else, that is not very very close by, as being beneficial. IMHO it is not very Tele-anything.

  2. Cathy

    It does depend on the epilepsy and the individual … say the person has warning of their seizure, can make themselves safe generally and then needs to be left to sleep for a wee while – it may be valuable to have an alert raised at distance so they can be checked with as they have previously agreed would be appropriate? I worked with a person who that would apply to but in fact we didn’t include monitoring we concentrated on the lifestyle factors and taking AED meds at the right times.

    That same person liked to go walking – the group he joined were ignorant about seizures and out of their fear effectively excluded him – maybe an alert (mobile phone based) that contacted a regular caregiver to be able to know exactly how to handle it might have been of value? they wanted the caregiver to go on every walk with him which he felt (and we and family agreed) was intrusive.

    I can see the point of night seizure monitoring referred to in the document as part of assessment because as it stands we often don’t have reliable data about night time seizures and therefore cannot offer a fully informed choice of telecare solutions.

  3. Malcolm Fisk

    With regard to experience regarding the use of bed epilepsy sensors there are only two studies I know of … one in a New York hospital, the other an evaluation which I led for Fold Telecare for their service in the Republic of Ireland. The earlier study showed poor performance of bed epilepsy sensors in identifying tonic clonic seizures – though there was a clear need for further work in relation to the movement algorithms, sensitivity settings and time delays. The latter study indicated real (day to day) benefits of bed epilepsy sensors for people with seizures (enabling help, avoiding SUDEP, etc.) and their carers (being able to sleep in a separate room, with huge QoL gains, rather than being on tenterhooks in case the family member had a seizure without them knowing). There’s a chapter I’ve published on this evaluation (ina recent book) that might be helpful.

    So UNATTR is right that the most important benefits are for carers (often family members) who are ‘on the spot’. Cathy is also right that there are broader issues regarding the use of technologies to identify seizures (and facilitate responses to) when those seizures manifest themselves differently (with or without an aura = warning) or where the people who experience seizures are on the move, in school, work, etc. So there are clear issues about the technologies (and their effectiveness) and the responses … especially because of the risk of death through SUDEP (Sudden Death through Epilepsy).

    But watch this space. It is one where there will certainly be important breakthroughs and there really is the possibility of empowering many people who experience such seizures – facilitated through both telehealth and parallel changes in the nature of ‘rescue medications’ and the manner of their administration.

  4. Cathy

    Malcolm, thanks for your update, really interesting. Did the work with Fold include looking at the wrist worn Epi-Care Free? possibly not since that is a comparatively recent introduction in the UK.

    I started an evaluation of one with a particularly sensitive service user (but sadly I wasn’t able to complete it when my role ended – hope it has been continued) I thought it showed promise as a really good alternative to bed sensors especially for people for whom a carer with them 24/7 would be overly intrusive.

    This is also one of the areas of telecare which would really benefit from join up with Epilepsy specialist clinicians who have certainly seemed reticent to even consider technology as a support based on poor experience of efficacy.

  5. Kevin Doughty

    Perhaps this report, and the associated comments, serve to emphasise the gap (in terms of years) between clinical practice and the successful use of technology. Might clinicians be hiding again behind their need for evidence before supporting telecare devices whose efficacy is “blindingly obvious” to those at the coal face – and especially the carers who can sleep soundly in their beds in the knowledge that their loved ones are being looked after by systems that are far less intrusive and far more tuned in to the needs than humans can possibly be?
    Personally, I would like to see epilepsy treated more like other long term conditions such as COPD and heart failure. This would encourage the care professionals to collect all the data during a seizure so that retrospective analysis can be performed and machine learning used to improve the algorithms that detect problems and generate alarms. Wrist-worn devices would then become more accurate in their detection of problems, as would devices based on intelligent clothing and/or intelligent beds. Such an approach would also make the setting of alarm thresholds more objective and would relieve care professionals, equipment installers, care assistants and family carers from having to make decisions based on a lack of hard data. The devices already collect such data (activity rather than physiological, but easily expandable) – mobile technology and cloud computing make all this very practical and without great cost.
    Of course, this might then be termed telehealth rather than telecare, and would require the artificial boundaries between the disciplines to be removed!

  6. Malcolm Fisk

    Cathy … You must get in direct touch with Kevin and I (and UNATTR?). This is an agenda we could get moving. And, no, the Fold evaluation did not look at Epi-Care … it was using the Emfit bed movement sensor. Perhaps, as much as the clinicians – our attention should focus on the Epilepsy Specialist Nurses.

  7. UpNorthAndToTheRight

    I think that if it were for intelligence gathering (Kevin) and that intelligence somehow assists the person to self care then that is excellent. Possibly linked with activity sensors that can show movement post seizure; IP cams that record from the point of potential seizure detection to afterwards to enable people to understand what happens during those lost hours and days.

    Most people who die with epilepsy as the main cause of death die due to the seizure. The approx 1000 a year that do die are on the whole younger people

  8. Kevin Doughty

    The aim should always be to give people with long term conditions the tools and the information to enable them to exercise as much self-care as possible. The technology should therefore support measurement, transmission, storage, analysis, prediction and, thus, prevention.

    That is certainly what I think can happen with epilepsy – so let’s introduce more cameras, sensors and technology, and try to avoid some of these deaths. It’s not about saving money – it’s far more serious than that!

  9. Cathy

    It is absolutely more serious than that Kevin – of course preventing any of those deaths is a positive and valuable contribution but what about the numbers of people who have seizures for whom life is sitting at home because they are unaware of, have no access to or are afraid to trust technology.

    I have no statistics but I lost count of how many referrals I have seen from people working within Learning Disability support where epilepsy was a factor. The referral would be for telecare for some other aspect of that individual’s need because they already had a solution for the epilepsy … to wrap the individual in cotton wool, remove all objects they might bump their head on and have someone sit with them 24/7 … we can do better than that surely? well yes we can given the right amount of information and insight to that individuals seizures and lifestyle and then we have to overcome the fear factors.

    I agree with you that this is in the overlap territory between telehealth and telecare, and I agree with Malcolm about the Specialist Nurse involvement.

  10. Malcolm Fisk

    OK, what next? There are real possibilities here … and I’m happy to host a meeting (HDTI, Coventry) to discuss how we take things forward (and find funding) for (a) robust testing of the different movement sensing products; and, maybe (b) (though this would require NDAs) about the way that we can use technologies to deliver what so many people with epilepsy are crying out for. I’ll say no more on a public posting!

  11. UNATTR

    You actually need a Public Health intelligence unit aimed at making sense of the data and providing advice and guidance to the person as well as the appropriate support services. Currently we are working from the alert, response, fix; alert, response, fix point of view – very much a hospital/health model and as staff are so busy doing this they are not empowered with the time and luxury to examine the big picture. I had two cases this morning passed to me for advice – one was a person who had contacted a control centre 170+ times over the Xmas period (3 days) and another who has had 17 hospital admissions in the past year. Both known to at least three different statutory services. The Bigger Picture Unit could have sorted addressed this very quickly. And the reason no one has addressed this – easier to treat and retreat than address and progress.

  12. Cathy

    [quote name=”UNATTR”]Currently we are working from the alert, response, fix; alert, response, fix point of view – very much a hospital/health model and as staff are so busy doing this they are not empowered with the time and luxury to examine the big picture. [/quote]
    Did you sneak into one of my training sessions and not introduce yourself? Big Picture thinking was my introduction exercise and it was very well received by those very staff because they know they don’t have time to do it but they also know that it would inform their practice and thereby benefit their customers.

    [quote]- one was a person who had contacted a control centre 170+ times over the Xmas period (3 days) … Both known to at least three different statutory services. [/quote]
    Sounds so familiar and yet so many times giving access to a device to contact a control centre is seen as problem solved!

  13. Cathy

    [quote name=”Malcolm Fisk”]I’ll say no more on a public posting![/quote]

    Malcolm you should have a ‘connect’ request on linkedin – I couldn’t add much in the note and would like to add to it.

  14. Kevin Doughty

    The big picture needs big data – and existing seizure detection products provide little context and next to no opportunities to identify triggers or pre-event conditions that might result in prediction when seen again.
    The good news is that the technology has already been developed (including infra-red video) but hasn’t yet been applied to this particular problem. We don’t need a research project – because that’s the way to delay a product by 3 years. What we need are trials which use multiple devices (for safety) and inputs that are presented in such a way that stakeholders (individual, family carers, support workers and professionals) can visualise the data (and derived parameters) in the most effective way for their level of expertise and professional training.
    The trials need to be independently validated but don’t need to be complex RCTs because we would be looking at events rather than at clinical outcomes.
    Happy to help you in arranging this Malcolm – and could offer alternative venues.

  15. Steve Hards, Editor

    If any of you are going to put a company together to crack this topic with devices and/or services, count me in for the website management and online marketing.

    Steve

  16. Ben Carter, Possum

    I have been reading the thread with interest. As you all may or may not know we have the exclusive distribution contract for the Epi Care Free in the UK. (Malcolm/ Kevin) I would be very happy to loan out a sample for evaluation if required and share clinical data on the product that we now have available. Let me know.

    Ben

  17. Kevin Doughty

    Thanks for the offer Ben.
    I’m sure that CUHTec and its members will be keen to try the Epi Care Free, especially if it produces clinical data. Maybe T-Cubed can organise a Group Comparison Study for publication on the Telecare EPG?
    I guess that my suggestion is that we recognise the range of comorbidities that might also affect people who suffer from epilepsy. This includes CHD and respiratory disease but also, in the case of people with learning disabilities, a possibility that they might also suffer from obesity, GORD, dysphagia, cerebral palsy and other conditions that could lead to exacerbations and the need for rapid intervention. Telemonitoring through worn devices might then improve their health prospects and increase their dignity and independence (and thus their Quality of Life) – especially if it could be achieved through a single device that could be worn in a manner that stigmatises them.
    That’s one of my dreams – and I welcome anything that can bring it closer to reality.

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