On this In Dialog podcast, Dr. Seonaid Anderson is joined by Professor Chris Hollis, who’s main a analysis group engaged on a analysis mission about ADHD treatment and Tics. The main focus of this podcast is on this analysis mission, referred to as The SATURN Trial.
The complete identify of the trial is the ‘Stimulant Medicine for ADHD and Tics – Understanding Response versus Non-stimulants (SATURN): a randomised trial of the medical and cost-effectiveness of methylphenidate versus Guanfacine for ADHD in youngsters and younger folks with a co-existing tic dysfunction’.
Dialogue factors embody:
- Definition of Tics and ADHD.
- Potential challenges of differentiating between tics from a Tic Dysfunction, resembling Tourette Syndrome, from different actions from situations resembling chorea dystonia myoclonus.
- Differentiating between stimming actions and tics.
- The explanation behind The SATURN Trial and the way it’s funded.
- The effectiveness of non-stimulant treatment in treating the signs of ADHD.
- Co-morbidity and Tic Issues.
- Affect of the continuing scarcity of ADHD treatment on sufferers.
- Why folks must be inspired to get entangled on this analysis and the medical implications from this analysis.
This episode is a part of The Affiliation for Youngster and Adolescent Psychological Well being’s sequence on Tourette Syndrome and Tic Issues. The sequence explores the evidence-based analysis on Tourette Syndrome, and different Tic Issues, in addition to the schooling, remedies, and analysis on this space.
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Chris Hollis is Professor of Youngster & Adolescent Psychiatry on the College of Nottingham, Director of the NIHR MindTech MedTech Co-operative and leads the NIHR Nottingham BRC Psychological Well being and Expertise Theme. His is Principal Investigator on the HTA ORBIT (On-line Distant Behavioural Intervention for Tics) trial and led the HTA funded evidence-synthesis and systematic evaluate of remedies for tics in youngsters and younger folks (Hollis et al. Well being Technol Assess, 2016. 20, 1-450) and the AQUA trial of QbTest for ADHD (Hollis et al. Journal of Youngster Psychology and Psychiatry. 2018 Dec;59(12):1298-1308).
Chris educated in psychiatry on the Maudsley Hospital and Institute of Psychiatry, the place he was awarded an MRC Coaching Fellowship and accomplished his PhD on the long-term grownup end result adolescent-onset psychosis. He works as a Guide in Developmental Neuropsychiatry with Nottinghamshire Healthcare NHS Basis Belief and leads a regional lifespan neurodevelopmental service, together with a Tourette’s Clinic and Grownup ADHD Clinic based mostly at Queen’s Medical Centre. His medical and analysis pursuits embody ADHD, Tourette syndrome, early onset schizophrenia and the event, analysis and implementation of digital applied sciences to help higher psychological well being.
As Director of MindTech, Chris is keen about harnessing digital know-how and constructing its evidence-base in psychological healthcare by bringing collectively sufferers, clinicians, lecturers and know-how builders. In 2020, Chris was a contributor to the 2020 World Innovation Summit for Well being (WISH) report: The digital psychological well being revolution: Reworking care via innovation and scale-up. He was the recipient of the Affiliation of Youngster of Youngster & Adolescent Psychological Well being (ACAMH) Digital Innovation Award 2020. He not too long ago led the James Lind Alliance precedence Setting Partnership’s Prime 10 analysis priorities for digital know-how in psychological healthcare (Hollis et al. Lancet Psychiatry. 2018 Oct;5(10):845-854). Chris chaired the NICE Guideline for schizophrenia and psychosis in youngsters and younger folks (2011-13) and was a member of the 2018 NICE ADHD (Replace) Guideline Committee. He’s a member of Innovate UK’s Digital Well being Technique Group. In 2015, Chris obtained a prestigious NIHR Senior Investigator Award. This distinguished accolade was awarded for an extra 4 years in April 2019. (Bio from College of Nottingham)
Seonaid is a chartered analysis psychologist and freelance neurodiversity guide with a few years expertise in neurodevelopmental problems. She offers help to analysis professionals at each stage of the analysis course of and to healthcare consultants of their medical work, for people, universities in addition to the general public sector. She offers specialist recommendation and steerage on the therapy and administration of a variety of neurodevelopmental situations resembling autism spectrum problems (ASD), consideration hyperactivity dysfunction (ADHD), Tourette Syndrome, dyslexia, and psychological well being. She is on Twitter @Seonaidanderso2 and may be discovered on LinkedIn.
Different episodes
- Episode One ‘Teenagers, Tics, and Tech’ – Camilla Babbage ‘In Dialog Tourettes Syndrome’
- Episode Two ‘Schooling, and Educating, about Tourettes’ – Lucy Toghill ‘In Dialog Tourettes Syndrome’
- Episode Three ‘‘Tics, and Tic Issues; the sudden onsets and influences of the pandemic’ – In dialog with Dr. Tammy Hedderly’
- Episode 4 ‘Cultural Variations in Tics and Tic Issues’
- Episode 5 ‘Tic Issues and Tourette Syndrome: Exploring the INTEND Venture’
Transcript
[00:00:01.300] Dr. Seonaid Anderson: Whats up. Welcome to the In Dialog sequence for the Affiliation for Youngster and Adolescent Psychological Well being, or ACAMH for brief. I’m Dr. Seonaid Anderson, a Chartered Analysis Psychologist and Neurodiversity Guide with experience in Tourette syndrome. I’m excited to be right here in the present day as that is a part of our sequence of podcasts that ACAMH is internet hosting on Tourette syndrome. And over the course of the sequence, we’ve been wanting on the evidence-based analysis about Tourette syndrome and different tic problems, in addition to schooling, remedies, and analysis on this space.
Right this moment, I’m honoured to be talking with Professor Chris Hollis, who’s main a analysis group, engaged on a analysis mission about ADHD treatment and tics. Chris Hollis is Professor of the Youngster and Adolescent Psychiatry and Director of the NIHR MindTech and of the School of Medication and Well being Sciences on the College of Nottingham. It’s nice so that you can be a part of me in the present day, Chris. Thanks a lot for being right here.
[00:01:14.750] Professor Chris Hollis: It’s an actual pleasure to talk to you in the present day.
[00:01:17.960] Dr. Seonaid Anderson: Thanks, Chris. So, we’re going to be speaking about this present analysis mission referred to as SATURN, and the complete title of the mission is Stimulant Medicine for ADHD and Tics – Understanding Response versus Non-stimulants: a randomised trial of the medical and cost-effectiveness of methylphenidate versus guanfacine for ADHD in youngsters and younger folks with a co-existing tic dysfunction. So, if persons are listening and so they’re fascinated about discovering out a extra details about ADHD or tics and tic problems like Tourette syndrome, then ACAMH have subject guides on these situations. However suffice to say, in a short time, that ADHD, or attention-deficit hyperactivity dysfunction, is a neurodevelopmental dysfunction characterised by government dysfunction with signs of inattention, hyperactivity, and impulsivity.
Tics are a sudden and repetitive motor motion or vocalisation, and they are often invisible to the observer, resembling belly tensing or toe crunching, however frequent motor and phonic tics are eye blinking and throat clearing, for instance. So, Chris, my first query could be from a Clinician’s perspective, would it not be difficult to distinguish between tics from a tic dysfunction resembling Tourette syndrome from different actions, from situations resembling chorea, dystonia, myoclonus?
[00:02:52.460] Professor Chris Hollis: I believe the difficulty typically for tics is that they’re truly comparatively simple to evaluate and diagnose and have some attribute options, notably the urge or the feeling of a warning of a tic, which is usually fairly attribute of tics, which is usually relieved by the tic itself. However in our follow, the – definitely during the last two or three years, one of many predominant differentiations have been what’s referred to as useful tics, that are differentiated from major or neurological tics. And we noticed many extra of these throughout the pandemic. And the essential level there’s that the remedies for tics and first tics typically don’t work for useful tics. And useful tics have been seen rather more generally with a brand new onset, typically in adolescent females, typically fairly a sudden extreme onset of advanced tics. So, a special presentation sample and positively one thing that we’re extra conscious of and essential to distinguish.
[00:04:03.170] Dr. Seonaid Anderson: And what about different actions, resembling stimming that’s seen with autism spectrum problems? Is that one thing that’s tough to distinguish between the stimming actions and the tics from a neurological dysfunction like Tourette syndrome?
[00:04:20.200] Professor Chris Hollis: Sure. Properly, that’s a very good level as a result of autistic spectrum dysfunction generally co-exists with tics, and younger folks with ASD and tics could have tics and stimming stereotypies, manneristic actions. They are often differentiated within the sense that younger individuals who have the ASD actions have a tendency to not have the straightforward tics, the straightforward sounds and facial motion. Their actions are sometimes extra what we’d describe as advanced or mild advanced tics. However once more, they don’t have the premonitory urges, but additionally they are usually fairly fixed moderately than waxing and waning in the way in which that tics do, however they typically do co-exist. So, it may be an essential consideration to distinguish.
[00:05:13.770] Dr. Seonaid Anderson: And naturally, Clinicians listening will likely be conscious as properly that ADHD and tics are additionally generally discovered collectively, and that’s the complete focus of the examine.
[00:05:27.960] Professor Chris Hollis: Completely. So, round 20% or one in 5 of younger folks with ADHD do have vital tics. Generally they are often underneath recognised, and in these younger folks with tic problems, which problems have an effect on about 1% of the inhabitants, it may be as much as 70/80% have co-existing ADHD.
[00:05:53.280] Dr. Seonaid Anderson: So, that’s fairly astonishing actually, isn’t it?
[00:05:57.340] Professor Chris Hollis: Hmmm.
[00:05:58.340] Dr. Seonaid Anderson: To listen to these figures as properly. However do you assume in – if a toddler is being seen for ADHD, for instance, in a clinic setting and so they even have tics, the tics could, type of, go unrecognised or be seen as much less of a precedence for the kid?
[00:06:15.340] Professor Chris Hollis: That’s generally the case if – and notably if the tics aren’t inflicting misery or disruption and so they might not be the main focus of the eye. We’ve definitely additionally had Clinicians report back to us that they’re much less – a few of them are much less assured of their evaluation of tics, and infrequently it’s the whether or not you’re truly together with them. If the kid is being assessed for ADHD, clearly they want evaluation for emotional temper nervousness problems, notably additionally for ASD signs and traits, but additionally for tics ‘trigger – as they generally co-occur.
[00:06:56.690] Dr. Seonaid Anderson: So, Chris, are you able to clarify the rationale behind this analysis examine SATURN and the way it’s funded?
[00:07:04.210] Professor Chris Hollis: It’s actually driving and – or attempting to reply a reasonably easy medical query. I’m a Clinician in addition to an educational and I see younger folks with ADHD and tic problems. And it’s actually attempting to deal with the query of what’s the greatest treatment for these younger folks? And addressing the uncertainty in the meanwhile about, you probably have an adolescent with ADHD and tics, what’s the greatest therapy? There’s a variety of remedies accessible, stimulant drugs and non-stimulant drugs. And in the meanwhile, the proof doesn’t level to which might be your best option to advocate.
[00:07:44.470] Dr. Seonaid Anderson: And a few – within the – in earlier discussions, listening to from dad and mom and maybe some Clinicians as properly, there appears to be a priority that stimulants would possibly enhance tics and due to this fact there’s a – they favour prescribing non-stimulant treatment to youngsters and younger folks with ADHD and tics. Is that one thing you’ve discovered, as properly?
[00:08:07.960] Professor Chris Hollis: That’s proper. Definitely, you understand, from coaching after which, you understand, medical college and past, and in the event you have a look at the outline of stimulant drugs, one of many hostile results that’s typically quoted in issues just like the British Nationwide Formulary and different locations is tics and – or a possible contraindication may be tics or Tourette’s. So, there was that concern, that, type of, worry that treatment, notably stimulant treatment, which is seen as a – doubtlessly as a dopamine, noradrenaline agonist might make tics worse. And definitely, in particular person circumstances there are stories of that, though it could possibly be coincidental or it could possibly be a real response.
We all know that in the meanwhile, taking a look at trials general as a bunch, these younger folks handled with stimulant drugs don’t appear to be having an impact the place tics are made worse. However that’s fairly a selective inhabitants that are likely to enter these therapy trials and addresses much less the difficulty of younger individuals who have a mix already of ADHD and tics and the way they’re going to be affected by that therapy.
[00:09:29.000] Dr. Seonaid Anderson: And after I’ve spoken to households earlier than concerning the difficulty of ADHD stimulant treatment doubtlessly making their youngster’s tics worse, I’ve additionally, type of, mentioned, it’s my understanding that most likely – it’s most likely due considerably to the timing of the 2 neurodevelopmental situations coming together with ADHD signs occurring at a barely earlier age after which the tics showing afterward in improvement. Does – have I been a bit inaccurate or is that one thing that’s typically accepted, as properly?
[00:10:01.880] Professor Chris Hollis: I believe that’s proper. You might be – you’ve made an excellent level that ADHD tends to have its onset earlier. So, maybe you may be seeing issues at, type of, age 5, six, that, type of, age, however tics and tic problems current moderately later. So, typically tics would possibly emerge at, type of, age seven to 9, and so, it might simply be the pure course and development {that a} youngster with ADHD develops their tics a little bit bit later, however they’re on ADHD therapy and due to this fact that’s attributed to the therapy when it’s simply the pure course of when tics emerge.
The opposite issue is that tics, as we mentioned, they fluctuate, they wax and wane, and so, you may get the coincidental waxing rising of tics after the onset of treatment or of beginning ADHD treatment. So, you do want to attend and see whether or not that’s truly a causal relationship or whether or not it’s simply the pure fluctuation of tics over time.
[00:11:08.000] Dr. Seonaid Anderson: And so, my understanding regarding the drugs accessible and the trial – SATURN Trial is taking a look at two of those drugs that – is it true that the non-stimulant treatment could also be much less efficient in treating the signs of ADHD?
[00:11:26.330] Professor Chris Hollis: There’s some proof. We’ve checked out each within the NICE guideline for ADHD and evaluating stimulants and non-stimulant treatment, that in the event you’re simply contemplating younger folks with ADHD, that stimulants are the best therapy of ADHD. Now, that won’t at all times be the case for each particular person, however as a bunch, we’d advocate stimulant drugs because the first-line and that’s what you see within the NICE steerage.
Nonetheless, NICE tips are written in a barely synthetic means for particular person – type of, spec – particular person situations, however truly, in the true world, folks and younger folks have a mix of situations. Comorbidity is the rule with neurodevelopmental problems. And so, the rules are of restricted assist actually, when it comes to making therapy choices, however definitely in case your precedence is treating ADHD, even with co-existing situations, then typically, we’d are likely to advocate stimulant treatment.
[00:12:35.430] Dr. Seonaid Anderson: And also you talked about the NICE tips for – there for ADHD and at the moment, there aren’t any NICE tips for tics or tic problems.
[00:12:46.390] Professor Chris Hollis: That’s proper. So, we now have – we’ve produced various opinions. There’s a European guideline for tics and tic problems, however they’re not based mostly on the identical systematic evaluate and the identical methodology that NICE views. So, you’re completely proper. There’s a hole and it’s truly fairly an essential hole and we’re persevering with to press for a NICE guideline – NICE steerage for tics and tic problems.
Nonetheless, this examine, the SATURN Trial will truly, you understand, contribute considerably to that info as a result of as I mentioned, the information we now have from trials tends to be in fairly refined teams that don’t essentially have an effect on medical follow. So, it could be normally younger folks with ADHD, however with out typically excluded these with comorbidities, notably say a tic dysfunction. Though we are likely to know what works greatest for kids with ADHD, typically with out different vital situations. We all know a lot lower than – for these younger individuals who have a mix of ADHD and tics.
[00:13:54.399] Dr. Seonaid Anderson: Hmmm, and it appears to be with tics and Tourette syndrome that truly having a comorbidity, whether or not that’s ADHD or OCD, is definitely more likely than having a, type of, pure type of tics or Tourette syndrome.
[00:14:11.920] Professor Chris Hollis: That’s proper, and due to this fact, you understand, within the clinics and the clinic I run, you – we very not often see younger folks simply with tics. And our therapy choices and our considering is usually about the way to handle a mix of various situations and signs and stability that. And so, a examine like SATURN is admittedly addressing that, type of, medical actuality and the uncertainty about what’s the greatest therapy to advocate.
[00:14:47.810] Dr. Seonaid Anderson: So, taking a look at this analysis examine, households from throughout England who’ve a toddler or an adolescent between six and 16 years previous with ADHD and tics can participate. And I believe an attention-grabbing a part of that is that the kid or younger individual doesn’t have to have been assessed by knowledgeable for tics earlier than or have been recognized with a tic dysfunction to be concerned.
[00:15:14.560] Professor Chris Hollis: Sure, that’s proper, and it displays that tics happen clearly with a variety of severity. And we’re actually fascinated about recruiting younger individuals who could have tics the place there’s a suspicion of tics with ADHD, however not essentially those that’ve had a tic dysfunction prognosis, which is definitely fairly uncommon and it’s fairly tough to get. So, that will actually prohibit the inhabitants of younger folks that will enter the examine. So, the requirement is, as you mentioned, their age, but additionally that they’ve an ADHD prognosis, however actually any suspicion of tics, however not a requirement they’ve had a – say, a proper evaluation or prognosis.
[00:16:01.960] Dr. Seonaid Anderson: Hmmm hmm. So, that basically opens it up, doesn’t it? And does it matter if individuals who may be concerned within the examine are already on treatment for his or her ADHD?
[00:16:14.089] Professor Chris Hollis: No, under no circumstances. So, we’re recruiting those that are so-called naive to treatment or ADHD treatment, in order that they might simply be having their first evaluation or being thought-about for treatment. So, that’s one group, however a second group are these the place they’re searching for a change of treatment. So, it could be that they’ve been on ADHD treatment and so they’ve had a poor response or they’ve had potential unwanted effects and so they’re contemplating a change or change of treatment.
[00:16:46.449] Dr. Seonaid Anderson: And would that be sophisticated? I’m considering from a mother or father’s perspective, I assume, would that be an advanced factor to do to alter treatment as a part of the trial?
[00:16:58.079] Professor Chris Hollis: Not notably sophisticated. It simply displays normal follow. So, the – all of the younger folks within the trial will likely be a part of an current medical service, or they’ll be underneath a group and a Clinician who refers younger folks into the examine. And that referring Clinician, both typically could be a toddler and Adolescent Psychiatrist or Paediatrician or a member of their group as prescribers, could be wanting usually to evaluate that youngster’s treatment and organise a change, which normally includes a gradual discount of their treatment, a washout interval, after which a reintroduction of latest treatment. So, that course of actually is kind of normal, fairly routine and all we’re doing actually is including within the issue of randomisation. So, we’re giving – primarily, there’s going to be two potential choices of therapy relying on which arm they’re random – the younger individual is randomised to.
[00:17:59.900] Dr. Seonaid Anderson: And can you ask sooner or later, I’d think about in the direction of the tip of the examine, how did treatment – how the sufferers and their households, which treatment they like? Do you assume you would possibly discover that contributors within the analysis could have a rise in tics, however they’re keen to place up with it as a result of they like that treatment kind, or how would you reply to?
[00:18:27.760] Professor Chris Hollis: It’s a very essential level. We gained’t be, in a way, giving every particular person each drugs. So, they gained’t have a, type of, comparability to make. Though they might have been on a medicine earlier than. So, if it – they’re in that group, they’ll be capable to examine to that treatment, however we’re wanting on the response of that younger individual to the treatment they’re allotted to, and that response is each when it comes to signs that we’ll be measuring. So, ADHD signs, enhancements and tics, although enhancements in tics and positively not worsening of tics, but additionally wider, what we name international functioning and high quality of life. So, younger folks and their dad and mom will likely be requested about how they’re doing usually and, you understand, not simply how their signs are being handled, however how this therapy is enhancing – decreasing impairment, enhancing their high quality of life. So, they are going to definitely be capable to have a view on that and people broader outcomes are actually essential. And as a part of the examine, they are going to be having common treatment opinions, younger folks and their dad and mom, and an opportunity to contribute details about how they’re managing with that therapy, about potential hostile results, and that can all be taken under consideration with the – within the trial.
[00:19:53.440] Dr. Seonaid Anderson: And whereas we’re with reference to ADHD treatment, it’s been fairly properly publicised that there was, type of, ongoing treatment scarcity of ADHD treatment within the UK. Has that had an affect on sufferers? You understand, what would you – how would you reply to that query?
[00:20:17.460] Professor Chris Hollis: Properly, it’s been properly printed – publicised, but additionally it’s actually, you understand, I’ve had expertise of sufferers, in our personal clinic in addition to via the trial, who’ve actually needed to battle to acquire treatment, and for a interval, they’ve not likely been capable of finding any in any respect, which is extremely anxiety-provoking, distressing, clearly when it comes to not having their situation managed. And a few dad and mom have needed to journey actually a whole bunch of miles, generally going to pharmacies in numerous elements of the nation attempting to chase down entry to ADHD treatment, in addition to drugs which are like clonidine or guanfacine, which is a part of this trial and is utilized in tic remedies. So, it’s a – it has had an affect on the trial itself, clearly, typically, the place these drugs have been accessible, we haven’t been capable of prescribe or randomise younger folks within the trial.
And in the meanwhile, as we’re talking, issues are – if the previous couple of weeks are wanting a little bit higher, nevertheless it’s – it exhibits that there’s numerous strain on these treatment provides. And we’re actually happy that we’ve had numerous help to attempt to proceed the trial as a result of clearly, you understand, with out entry to treatment, you understand, we are able to’t progress with the trial itself. However we’re hopeful that issues are transferring ahead and looking out a little bit bit extra promising over the following few months.
[00:21:54.450] Dr. Seonaid Anderson: So, thanks for that, Chris. I’m fortunate sufficient to be engaged on the general public and affected person involvement facet, serving to out on the SATURN tasks. And we’re searching for dad and mom of youngsters from six to 16 years previous in England who’ve ADHD and tics to hitch the PPI panel that we’re having as a part of the analysis mission. And naturally, that’s very important to serving to us form and have a look at the analysis examine and the way it works for folks and actually calling on folks to make use of their lived expertise to assist information the analysis and provides enter and folks can, after all, get entangled with that.
I’m going to present the e-mail tackle on the finish, however are you able to inform us, Chris, why you assume folks must be inspired to get entangled on this analysis? What are the medical implications that might come from this analysis and, you understand, with reference to healthcare professionals, how would they – in the event that they have been , how would they get in contact?
[00:23:05.390] Professor Chris Hollis: Yeah. Properly, thanks for highlighting that Seonaid, each of the emails saturn@nottingham.ac.uk, which you’ll – and in addition the web site. I believe it’s actually essential to see that there must be a – actually a proper for younger folks to participate in analysis. And that we enhance the entry and alternative for younger folks to participate in analysis trials for various causes.
Firstly, ‘trigger we all know that the standard of care is usually higher. We’ve got the sources to help care in medical trials. And so, the – folks throughout the age vary who participate in analysis have entry to superb medical care.
I believe the opposite level is that there’s actually a proper to have entry to evidence-based remedies and therapies. The quantity of younger folks in – notably in psychological well being providers who participate in analysis, notably treatment analysis is admittedly very low, a lot decrease than different areas of healthcare. And in consequence, typically they don’t have the identical entry to evidence-based remedies. And in consequence additionally, the infrastructure to help analysis trials, to help Clinicians when it comes to identification, recruitment of contributors, is admittedly underdeveloped typically in these providers.
So, when it comes to SATURN, Clinicians who do refer into the trial, the SATURN group has a analysis Clinician and so they handle the treatment, the initiation, the titration, monitoring for the primary three months of that trial. So, it – there actually is a bonus in having a analysis group concerned of their care, which then transfers again to the same old care group at three months after which we follow-up to 1 yr. So, there are benefits to the group, but additionally to the younger individuals who participate in it. However we recognise that there must be higher infrastructure, higher help to make it simpler and to, type of, scale back the friction of collaborating in analysis research for Clinicians and younger folks.
[00:25:26.600] Dr. Seonaid Anderson: Chris, that’s an ideal overview to finish with there. Thanks a lot for talking with me in the present day. It’s been actually fascinating and I hope useful for many individuals listening. I’m going to present now the small print of how folks can get in contact with the SATURN analysis group. The SATURN e mail is saturn@nottingham.ac.uk and there’s additionally a Twitter or X account and that’s @Saturn_Study. And the web site particulars may even associate with this podcast.
You may observe me, Dr. Seonaid Anderson on Twitter @Seonaidanderso2, and in addition go to my web site, www.neuro-diverse.org. For extra particulars on Tourette syndrome, please go to the ACAMH web site, that’s www.acamh.org, and you may observe them on social media by looking out ACAMH, A-C-A-M-H. Thanks a lot for listening.
