Known unknowns - ADHD

foreign of the bmj welcome I'd like to welcome you all to this webinar uh our Known Unknown series um has been going for what two or three years now and we really you know very grateful to Alison Pollock and George Davy Smith for establishing this uh for us and we really try to address uncertainty uh in medicine I think there's a great deal that's talked of uh with certainties if there's no doubt there's no debate but as we know um much of medicine and health is open to discussion open to debate and there's lots we don't know um and lots that we're trying to understand better uh through more research and through more conversation so that's our ambition uh for the rest of uh today for the next hour or so um and the topic for today is ADHD attention deficit hyperactivity disorder and we'll be looking at various aspects of ADHD we'll be thinking about what is ADHD uh we've been looking at the influences on diagnosis we'll have a summary of the evidence on drug treatment we'll consider the potential the role and the potential of psychological therapies uh we'll talk to somebody with lived experience about being diagnosed with ADHD um and will as well I think rather kind of topically look at the impact of social media and self-diagnosis so we do have a packed session for you you we'd like you to participate we've already had questions so that's great and we're putting we're putting those questions uh to our panelists today uh but but do keep sending your questions and do send them in through the Q a function that you see uh on on on the zoom uh conference that you're on and do introduce yourselves using the chat function so introduce yourselves using the chat function at any questions for the panel uh do do send them to us via the Q a function that you see before you and the webinar will be it's going out live but also will be available on YouTube uh shortly after it's finished um so let's get going and I'd like to just say hello and welcome to our our panelists if they could just uh appear on screen to say hello um we have with us Anita tharpa hello Anita we've got Stephen Hinshaw we've got Daniel Gorman we have Edmond sanuge Brock we have Kirsty and then we have Elia Abby jode so welcome all of you I've also got Alison Pollock with me uh one of The Originators I've known unknowns to help with some of the questions and the comments that you're sending in okay right without further Ado let's go to our first session which is um with Anita tharpa Anita's a clinical professor and honorary NHS consultant at Cardiff University so welcome Anita good to have you with us um if if I if the others could um leave the screen to Anita that would be great Anita you're going to take us through some the history of ADHD well some of it at least and talk about the epidemiology and help set out some of the known unknowns so thank you thank you can you all see my screen yeah right so these are my disclosures and all my salary comes from Cardiff University so I'm going to start with how is ADHD defined so for in clinical settings we use two main diagnostic classification systems one is the Who icd-11 currently and in the US the diagnostic statistical Manual of mental disorders DSM-5 is used they're broadly similar in their definitions to reach a diagnosis of ADHD you need multiple symptoms of hyperactivity so these would be symptoms such as excessive fidgetiness symptoms of impulsiveness for example constant interrupting and multiple symptoms of inattention for example failure to pay attention to detail it's not enough to have multiple symptoms the current classification systems require that problem start before the age 12. and it's also not enough to have them just at home in one setting so for children we will also require problems in school and for adults typically that would also be in work that's still not enough to reach a diagnosis these symptoms also have to interfere with day-to-day functioning so for children that could be with it peer relationships getting on with the social relationships and their family and for adults for example it could be managing day-to-day tasks so for clinical reasons we need to know whether someone has a diagnosis or doesn't a yes no decision because so many of our clinical decisions are yes no for example do I accept this referral or not do I use medication or not do I use treatment or not these are all yes no decisions but actually there's a lot of research in epidemiology and other research areas showing that there's a Continuum of ADHD in the population with everyone having some symptoms it's a bit like blood pressure if you like with those with diagnosis being at the high end at the top end I always think it's interesting that multiple research Studies have shown that with this Continuum that the risk of adverse outcomes is across the Continuum there isn't a definite cut point at which disorder appears again similar to blood pressure and I think it's interesting the threshold for treating high blood pressure today is different to what it was when I was a medical student a lot of people think ADHD is new it's not it's been described for centuries and in the medical literature was described by a Scottish physician in 1798 and the first sort of medical publication was it was published in the Lancet by a British pediatrician George still who described case series the current classification systems really came in in the later 20th century and moving from add in the US to the concept current concept of ADHD in all the classification systems now that we use ADHD is grouped as one of the neurodevelopmental disorders that are similar in that they onset in early development and involved early brain development differences so these include conditions such as autism spectrum disorder language problems learning disorders such as dyslexia intellectual disability and motor disorders all these conditions show massive overlap so ADHD shows overlap with them and also a higher than expected risk with epilepsy so a lot of people think surely ADHD is a Western and modern problem and actually there's been a lot of research done here so when you look at populations we're not talking about clinics just in the population Metro multiple Studies have shown that there aren't clear differences across countries even when you look at non-european countries what about when you look at population data which has been done across different time points well again at least for children there is no change in the ADHD symptom levels and I think what's interesting is that very same comparison research has shown increased levels of anxiety in children but not ADHD so why have Clinic referrals increased if symptom levels have stayed the same in the population and it's really uncertain as to why this is well one issue that we know is that there's increased recognition of course everyone's much more aware about ADHD and also aware that ADHD also affects adults it doesn't children don't grow out of it females with previously very much under recognized so this is one reason the other possibility we have to consider is over diagnosis because Under and Over diagnosis is not uncommon in medicine for example for epilepsy and Asthma both issues have been found but actually for ADHD and and certainly in the UK but quite a few countries the the the rate of ADHD in clinics is less than it is in the general population I.E we're not picking up everyone so there isn't a clear cut evidence everywhere but of course I think Steve may talk about some exceptions certainly not in the UK one possibility that clinic referrals might have increased is um comes from some research done on children again in the population which showed that over time whilst the symptom levels of ADHD haven't changed today there are greater impacts on learning and distress in children's reported by parents born more recently compared to 30 years ago which of course would also then drive referrals if there's greater um impacts of the same symptoms what causes ADHD there's a lot of speculation about this but actually the genetic research is really robust across um multiple different countries ADHD runs in families and there is actually a really strong genetic influence on ADHD like autism and schizophrenia I think it's important to recognize that not everything is very strongly genetically influenced for example anxiety is not there's been multiple lab discoveries again through International collaboration and it isn't just one gene which is of course true for most common conditions we see in medicine for example like diabetes and heart disease there's thousands of genetic variations of small each of small effect size which increase the probability of someone then having ADHD however there are some rare types of genetic variants which occur in less than one in a hundred people and they have a much larger effect size like for example chunks of DNA missing or extra and those sorts of Gene variants have been found to be much more enriched in people with ADHD also in autism also schizophrenia and intellectual disability but not for mental health disorder other types of mental health and and brain disorders the other thing that's really popular is people believe that ADHD must surely be explained by social adversity and quite often people think oh it must be the parents because they might just look at people with ADHD and people without and find maybe more family stress for example or different styles of parenting and people assume that must be a cause however you have to be really careful about assuming that because of course a child with Aid having a child with ADHD also has impact on what happens in the family and actually quite a lot of research has shown that children with ADHD that that um their the relationships improve after they've had treatment so this opposite direction is caused with called reverse causation so you have to always use research to look at that which isn't always the case that people do that the other factor is that it could be a third factor that hasn't been measured that's resulting in what people think is a cause for example something about parents or some other social factor and also which influences the child's ADHD so again you need research that really measures whether it's possible that this link is due to a third Factor so we have to be careful about thinking something is a cause so are there any robust findings on non-genetic causes well one finding that there are two I think that stand up to to rigorous tests one is preterm birth being born to you early because that has been shown no matter the relationship why people get born pre-term as very different in different countries but it's associated with ADHD everywhere and the other is work conducted by Edmund who you'll be hearing from later on who found that people who are children who are exposed to extremely rare deprivation of the extremity that we wouldn't see typically with the Romanian orphans they also showed autistic and ADHD like features the other thing is people think children grow out of ADHD and the evidence here is not the case so again that is why we're also seeing much more in the way of adult ADHD and services so the majority of people continue with symptoms and some people will develop other problems so for example depression substance misuse self-harm suicide more serious mental illnesses such as bipolar disorder and psychosis and whilst we haven't got long-term treatment trials there's some naturalistic studies that look at people when they're on and off medication suggesting that might help reduce risks it also has been found to let have an impact on education employment earnings as well as physical health and premature mortality however just want to emphasize there is huge variability some people are very badly affected whereas others really with proper support Thrive do well do medicine do phds and can really Excel treatments are not well tested that is not true we'll hear about that later there are high quality treatment trials in the UK we start with psycho-education school and work support lifestyle management and then added medication for adults talking therapies can be a useful addition but the long-term benefits of will here of medication have been hard to show so summary it's well recognized well researched there's increased recognition and referral it really requires a careful assessment you can't just diagnose ADHD not because it is a Continuum but you've got to balance risks versus benefits particularly if you're thinking about medication of having a label we can't ignore it because there are multiple ADHD adverse impacts and costs that's been showed widely and you have to be a bit wary of what you read because there's so many missing misrepresentation not grounded in research I need to thank you um an excellent start thank you very much um one question for you from me which is you talked about the greater impact today on learning compared with in the past uh why is that we don't know this it was a simple observation and to suggest that um there is also some preliminary evidence suggesting maybe mental health outcomes today may be worse which of course would then drive that referral so at the moment it's speculation but with anything and ADHD as well you might have something which is innate but the impact of it will also depend on context like your schools and how much you know how much flexibility you have what you view what are you supposed to achieve what what yeah what are the expectations so whilst there may be a biological contribution to symptoms the manifestation and its impact will also vary on by social context okay um I mean I was a little surprised you you were reasonably definite on the fact that that it isn't over diagnosis it's more it's increased recognition how what's the evidence around that okay um it is variable by country um and maybe Steve will say something about it one of my other colleagues but consistently in the UK in the UK and many European countries Studies have looked at the prev there's been multiple studies done of the prevalence of ADHD epidemiological studies done in the general population diagnose you know using diagnostic interviews the what's the prevalence rate and then what's the administrative rate though the prep the rape that's being picked up in clinics and is being registered you know in in clinics and actually it it it's so far I'm not saying it will stay like that it's been less than the true prevalence to date okay okay it's inferred from that but as I said it will vary by country to Country and even within countries yeah yeah I'm gonna just bring you Alice and Alice and are there any relevant questions at this point for Anita well there are a few um which may be picked up later as well but one of the ones is uh Anita is there a connection between ADHD and autistic Spectrum Disorder that's a question that's quite often asked yes it it there is it's um interesting because until 2013 the official U.S diagnostic classification and also the who did not like allow her diagnosis of ADHD and autism however most clinicians recognize that they they were actually ending up ex if that you know they they had Peach people with both um and the diagna the diagnostic classification systems have now removed that because there is a very strong overlap so people with Autism are at much higher risk of ADHD and people with ADHD are at much higher risk of autism with many shared risk factors so they're like cousins and and also that you know like you could have because of the shared genetics you could have one child with ADHD the second child with autism um interesting comment thanks um Anita Cameron there's some interesting comments coming in from my Canadian doctor saying in her Canadian practice she's yet to see anyone not receive the diagnosis who wanted it and she's worried about the explosion of adult ADHD clinics who do extremely quick assessments okay later but um there's another question about children should the referral be made through schools or through the general practitioner okay Anita do you want to respond to either of those two and then we'll move on to Stephen and very quickly two things in terms of referrals uh well at least in the UK it will vary by area to area in most of our areas we take from either there are routes for both um the second issue in terms of Canada I would leave that to my Canadian colleagues at the moment in the UK um you know within the NHS we we uh we are we don't seem to have over diagnosis but as I said that might change as we have you know increasing pressure with privatization I don't know um but as I said I can only go by research to date okay I think this conversation probably will be continued um thank you Alison thank you Anita uh let's move on to Stephen um and we'll have Anita back at the end when we take panel questions uh we've got Stephen Hinshaw so we've heard a little bit about the cause and the prevalence of ADHD let's talk now more about the diagnosis and what might trigger a diagnosis um Stephen is distinguished professor of psychology at the University of California at Barclay um and he's written extensively uh on ADHD and diagnosis and he's going to give us a quick tour through the social and cultural influences on diagnosis Stephen thank you very much I'm going to get my slides up so I'm going to make a few comments on let's see rehearsals so in just a very few slides I'm going to talk about a couple of Social and cultural influences on why at least in some countries diagnosed that diagnostic rates may be going up in United States in particular where they've gone up quite dramatically over the last several decades uh and I'll talk about a couple of potential influences one direct to Consumer advertisements uh second school policies that have uh my colleagues and I have shown have fairly dramatic impact on who gets diagnosed and which regions or states in the United States and getting back to a question that's been raised in a point that Anita made what about quick and dirty assessments does everybody who comes into a clinic get diagnosed with ADHD whether a child or an adult and then we can discuss uh greater a secular Trends but I've only got a few minutes so let's keep going direct to Consumer advertisements uh have been allowed for some years in New Zealand and in no other country except in 1997 and 1999 the United States FDA after some fairly careful study said it might reduce stigma and it would certainly reduce prices because of competition and advertising uh for pharmaceuticals uh so whereas before you would lose your medical license Etc if you were part of a an advertisement in anything other than a medical journal uh for the last 24 years uh they've become quite commonplace in the U.S and it's a multi-multi-billion dollar a year industry advertising for medications in in the popular press so because I'm not in presentation mode I'm going to go uh Advance my slides as careful as I can so under the doctrine of fair use I don't work for Pharma I have no disclosures uh to present to this audience today but I'm allowed to show a couple of sample ADHD medication ads to talk about their meaning and content under again the doctrine what's called fair use so here's an ad for Concerta this came out about 21 or 22 years ago Concerta was regular old methylphenidate trade name Ritalin put inside a space age uh plastic configuration that would gradually squirt out the riddle and the methylphenidate over 10 to 12 hours rather than the usual half-life of three to four hours so it was the first documented to be really effective long-acting form of ADHD quite popular with parents and schools because the kid wouldn't have to go to the school nurse there's no more School nurses in the US anyway and and to take the medication or forget to take it Etc so in this ad we can see The Stereotype of ADHD for a long time in in most countries especially the US was this is a white middle or upper middle class phenomenon so here we see the white uh smiling mother and her white son looks like he's just got his uh permanent teeth in so he's probably seven or eight and not going to uh go too long on this but the the content is the the mom says when Jason gets his medication I see the real boy I don't see those annoying disruptive symptoms I see who he really is inside so if you don't go too far in interpretation this may be in the ADHD medication ad land the first implicitly anti-stigma message that medicating your kid with ADHD removes the stigma and the bothersomeness allows natural family interactions and natural development to occur now whether that's true or not is is a huge question but it's hard to doubt that it's a very powerful message so next up is our next ad let's go this way I'm sorry to be slow with this but I can't quite get it in the presentation mode and so here's an ad from several years later and obviously the target here is adults with ADHD and if you have really good eyesight you can see that the Pharma company says with citations to psychiatric literature uh if you have ADHD as an adult you're about twice as likely to get divorces neurotypical individuals and about a third more likely to get major depression and if you don't study developmental Psychopathology or you're not trained in critical thinking it would be very convenient for an adult reading such an ad to say I'd like to stay married and I certainly don't want to get depressed so I should take ADHD medications again a pretty powerful message and by far the fastest growing Market in the U.S and I'm sure in Europe is for adults with ADHD the Baseline has been low medications have not been studied for adults with ADHD in the last couple of decades and now that market share is rising rapidly so here's our third a quick review uh uh ad in our quick review this is American baseball this is Shane Victorino the First Hawaiian American to play Major League Baseball two World Series championship rings power hitter and he teamed up with two national advocacy groups in the U.S and one pharmaceutical firm to present a series of commercials and uh print ads and as you can see this ad um is a quote from him I didn't outgrow my ADHD Shane says that's what I'm telling my story so it's a powerful anti-stigma message and in other ads he and his beautiful wife and beautiful children are doing outdoor activities and it's boy if if a power hitter like Shane Victorino can admit to ADHD and take medications uh perhaps so should I there's a bit of a back story here there's another reason why he is telling his story which is that in the United States if he were taking a stimulant medication for ADHD without an exemption without a medically certified diagnosis allowing him to take ADHD stimulants uh during games he'd be a kicked out performance enhancement just like series he'd lose 81 games out of the 162 Game season now I find it interesting uh I should update my data but from not too many years ago I looked up the statistics and about twice as many major league baseball players in the U.S had ADHD exemptions as did a National Football League National Hockey League uh NBA and there is a perhaps fascinating epidemiological story about why ADHD would cluster in baseball players but there's a much simpler explanation which is that baseball may be the most boring sport ever existed uh invented by humankind and long games they tried to speed them up this year four hours and the ninth inning the Sun is setting the Mist is coming in you've got to be very alert for that hanging curveball or you've got to be very alert for that line drive sinking in front of you out in left field so this is part of the controversy about ADHD and perhaps a fewer of diagnosis over diagnosis over treatment maybe people are gaming the system finding the right diagnosis to get a performance enhancing medication whether for school or for work or Major League Baseball so that kind of ends our series of ads and to make a comment or two so was the FDA right does the showing of such ads to the general public reduce stigma hard to know hard to randomly assign a segment of the population to see such ads and hard not to um maybe it's good for people to see on TV late night or read in a TV Guide magazine or a Ladies Home Journal uh about these diagnoses and be able to talk about them or does it convince people that they must have a condition that they don't and they're going to find a doctor who will give them that diagnosis do these ads reduce prices under the idea of competition and the answer there is an extremely clear no no pharmaceutical company in the United States publishes these ads once the medications have gone to generic and the the patent protection is lost the ad revenues stack up during the early years of the release of a new medication when there's essentially no competition so uh clearly that that kind of economic argument although it sounds good on paper is not being borne out how many of these ads emphasize the common finding in the literature that when you combine the right dose of medication uh with organizational skills or family behavior management or CBT for adolescents and adults with ADHD make a big difference absolutely none of them because they're not out to sell psychotherapies or psycho-educational interventions and finally how many pharmaceutical companies in the U.S who produce and promote ADHD medications have been fined for misleading ads and the answer is every single one on the order of several hundred thousand dollars to multiple tens of millions of dollars four misleading information and Miss citation of the literature etc etc so I'm not saying that director consumer ads are the bane of existence it looks like New Zealand may be reconsidering its policy on that but it's certainly part of the Zeitgeist that people with ADHD may not know they have it and they see advertisements and they get a diagnosis maybe even an online Tick Tock diagnosis and seek doctors who will prescribe medications foreign so I talk about a lot of this in a book I wrote with Richard Scheffler my health Economist colleague here at UC Berkeley the ADHD explosion and we pursued another Topic in the ADHD explosion which was Rising rates of diagnosis in the U.S and I don't have time to go through this slide these data are confirmed up through the next wave of the national uh survey of Children's Health that more and more kids are being reported by random sub samples of 100 000 families uh surveyed every few years the families are saying yes my child has received a diagnosis of ADHD or a health care professional has told me that my child has ADD or ADHD so the rates are going up at fairly uh intense rates overall but more important for our argument was that the rates are going up very disproportionately across U.S states so if you're good at geography you'll see that the highest rates of ADHD diagnosis back in 2012 this is pretty much confirmed with the data six seven years later although I don't have the map for it handy today in the South and Midwest of the U.S there's about three times the rate of diagnosis of ADHD officially than in the plains or the the Far West California Nevada out out where I live in fact in spot your geography here Indiana North Carolina and Arkansas the three highest States if you were a boy over the age of 10 the chances that you've had an ADHD diagnosis in your lifetime were upwards of 30 percent not three percent not 13 percent but three zero percent so there's a huge disparity in certain regions of the country having ridiculously over diagnosed rates of ADHD and again in the planes and and and Far West they were pretty much at the world averages that polensic and his colleagues have shown in several uh meta-analytic reviews of world diagnostic rates so Richard Scheffler and I looked at the demographics proportion of ethnic minority racial minority kids didn't explain anything what about the numbers of child adolescent psychiatrists or pediatricians in these areas uh didn't explain any variation at all what about uh California or rugged individualists and in the South it's a culture of honor and I could make up anthropological stereotypes but they don't explain uh anything but then Scheffler and I who join each other's lab meetings he told me early in our collaboration that once I gave a talk saying that the cause of ADHD was compulsory education and from Anita slides it took the Enlightenment and the Industrial Revolution for medical recognition of what now has become ADHD maybe having kids sit still in school and do things the human brain never evolved to do like learn to read um elicits and I was saying causes tongue-in-cheek but it elicits her uncovers or reveals the genetic variation and the kids who had the most trouble with self-regulation are the ones who get diagnosed so how could we test that hypothesis long story short the United States for the last 40 years has been very concerned about it's a reading and math test scores in public school kids every district has to do these massive tests several Days Every Spring and in the 80s and 90s 30 of the U.S 50 States passed laws saying that if your District didn't get its test scores up to a certain level or if the Delta the chains weren't big since the last year's assessment you'd lose funding or maybe even lose control of your school district these are called consequential accountability laws there's consequences and accountability for school achievement and then when uh George uh Bush too barely became president of the United States in 2000 the first piece of major domestic legislation he got through with something called No Child Left Behind which is to boost reading scores around the country it had nothing to do with ADHD but one of its Provisions was that consequential accountability now suddenly applied to the remaining 20 states in the U.S to make a very long story short and cutting out a slide or two if you were and we hypothesize that the effects on diagnosis would be right for the kids at the federal poverty level in the United States in this blue line at the top and by some miracle the timing of No Child Left Behind in consequential accountability timed exactly to the National survey of Children's Health first ever National survey of diagnostic prevalence of ADHD in the U.S a 60 percent increase in diagnoses in the U.S for those states that suddenly Had No Child Left Behind legislation compared to the states that had it before or compared to the private schools in those states that weren't subject to the laws or compared to the middle and high income kids in those States so is it a Smoking Gun no but it's a natural experiment suggesting an unintended effect District administrators are going to want to get kids diagnosed so that those kids could get treated and next spring the test scores were to go up or more perniciously and nefariously before the Obama Administration outlawed this in 2012 if you got more kids diagnosed in your District well they were now special ed kids and guess what next spring those scores were subtracted out of the district's average for reading and math so it was a very intentional way of falsely boosting test scores through an ADHD diagnosis in order not to lose your District's funding so what's the point here jeans as Anita explained so well uh in her brief time genetic variation is by far the largest driver of variation in ADHD symptoms nonetheless moving up levels of analysis school policies may have a fairly huge impact on rates of ADHD diagnosis especially for the most vulnerable lowest SES kids in a given region in the U.S and then finally because I think I'm a minute or two over none of this would happen if in the U.S the professional guidelines from the American Association of Pediatricians and American Academy of child adolescent Psychiatry were followed hundreds of pages of what you do to get norm-based parent and teacher ratings and do a developmental history interview and look for maltreatment and Trauma and talk to the teachers directly and test for learning problems as you need to the average kid in the US gets diagnosed in a single 12 or 15 minute visit with a general pediatrician with no specialty training the average adult gets diagnosed in a general practitioner's office with absolutely none of the evidence-based stuff that I'm talking about here that would be needed for a careful diagnosis so in the U.S we can pretty confidently say that boys are over diagnosed girls however because of their later presentation and the coping and compensation and give a whole nother talk about girls with age DHD are still at some risk in many regions of getting under diagnosed so thanks for the time sorry I couldn't get my slides in presentation mode I will stop sharing my slides but not stop sharing answers to questions both now and in the general discussion Dave thank you um look I think we you know we haven't got too much time now for the next speaker but we do want to ask you some questions so are you saying I mean you spoke about direct to Consumer advertising and you spoke about what's happening in schools I I you're saying they're both factors that are driving over diving so we're finally recognizing that ADHD is real and exists yeah um the huge rates in California autism spectrum diagnoses the large majority of this is finally recognition and not calling kids with ADHD something else which they've been called for decade after decade but in achievement-driven society so the two countries with the highest rates of ADHD diagnosis we know of are the United States and Israel and we could do cultural analysis of the extreme pressure offer treatment and then everyone must go to college or university unlike so many other countries where it's reserved for a much smaller number and the pressures puts on families and school admissions Etc I think what we need to do and one of the messages from the whole morning for me here and evening for you all over there is shifting from multiple levels of analysis genetic influences low birth weight other biological factors are crucial for understanding who does and does not have ADHD but levels of cultural messages and school policies May at a top down much higher up on the levels of analysis also be a direct influence on who gets diagnosed when and where okay um Alison I know there are a lot of questions coming in and lots of comments just to remind um everybody who's who's watching and listening put your questions into the Q a don't put them in the chat because they might get missed but Alice any general themes that you're picking up and another question for Steve well well lots and lots of questions coming in but I think have a really important one is this issue of being more child-centered in education and is this calling for a change in policy and are there other countries that are doing it better such as Finland for example which is very high attainment rates but also less pressure in schools so that's a question so when you get to this level of analysis and I was trained as a clinical and developmental psychologist not a policy person or an epidemiologist there's a whole lot of uncontrolled factors whenever you try to look at Regional local or national or even international rates there are many influences what's the TR I mean in the UK the hyperkinetic syndrome etc etc was very rarely diagnosed until most recently because it had a different diagnostic standards and medications were hardly ever used the United States with its kind of wild west director consumer ads he was almost waiting for advertisements and supposed competition to drive up rates of diagnosis nurses to help boost test scores so I'm not saying that we have answers but we've got some provocative ignatural experiments to show we need to look at various levels of influence to understand not only the individual but the cultural phenomenon of ADHD thank you is there any one comment before we move on no I think that I think that's fine Cameron we should move okay thank you Steve thank you we'll see you again in the panel discussion but thanks to that okay um our next speaker is Daniel Gorman now we've spoken about diagnosis diagnosis ends up with with treatment and drug treatment is is one of the options and um stimulant drugs clearly are often talked about and the widespread use of stimulants in the young population has caused concern as we know amongst doctors and parents so to take us through the benefits and harms of treatment we've got Daniel and and also talk about withdrawal we've got Daniel Gorman Daniel is director of postgraduate education in the division of child and youth mental health and a staff psychiatrist at the hospital for sick children in Toronto So Daniel so thanks so much Cameron for that warm introduction uh let me first uh share my slides and hopefully this will work and let me now go into presentation mode yes is that okay um so it's a real pleasure to be here to talk about drug treatment of ADHD the question mark at the end of the title is deliberate uh because I think there are a lot of questions about drug treatment of ADHD including whether it should even be initiated for a given child so in terms of disclosures I don't have any Financial disclosures but one more General disclosure although I have done some research in my academic career uh mainly involving knowledge synthesis my academic career as Cameron alluded to in the introduction has been primarily as a clinician and as an educator I'm actually no longer the program director for child psychiatry at the University of Toronto I did that for eight years and and then stepped down from that role in the fall but in that role I was very involved in of course educating but more specifically uh teaching around ADHD so some of the information that I'm presenting here is really um distilled from teeping really hundreds of residents over the last couple of decades on this topic so with that perspective in mind um there are three known unknowns that I want to address um in this talk so the first one um you know it's a very straightforward question who should take ADHD medication but I think um this is a real unknown and we can't agree across the world and we can't agree over time uh what the threshold should be for prescribing ADHD medication um a second big unknown is whether ADHD medication is effective in the long term I think it's quite clear um that ADHD medication especially stimulants uh improves in attention hyperactivity impulsivity in the short term it's actually one of the gratifying aspects of doing this work is that you see kids improve very rapidly before your eyes but the question of what are the long-term benefits I think remains important unknown um and then just as important what are the long-term harms of ADHD medication and there unfortunately we have very little robust research to inform us although there is some and I'm going to focus on the research that's been done on the effects of growth including height so who should take ADHD medication as I mentioned a moment ago um We can't agree we can't agree from one country to another and we can't agree over time um so here it's a pretty busy graph but what you have um on the y-axis um is the prevalence of ADHD prescriptions and then on the x-axis uh you have uh the year starting with 2000 and going through um 2015. um and you can see that the prevalence of ADHD prescriptions varies widely across the globe it is highest in the United States I always thought that the second highest was Iceland but Steve mentioned that it was Israel and I took a quick look at this graph and note that for some reason Israel isn't on it so perhaps Israel is higher than Iceland but in any case those are sort of the outliers everyone else um including Canada where I am and the UK are much lower although no matter the country there is an almost invariable pattern of increasing rates of ADHD prescriptions over time over the last two decades now this red solid line is the estimated prevalence of ADHD um I think the figure that Anita quoted uh before sort of the standard figure of five percent uh data that she actually also cited from philanthric and colleagues suggest that it might be as high as close to seven percent um and so you can see U.S prescription rates actually approach um that prevalence of the diagnosis itself and so you know if you think and this is a big if that every kid with ADHD should be treated with medication you might argue that the United States actually has it right and everyone else is being under treated um of course even in the United States there would be the question are these the right kids who are being treated with medication because there still could be kids who have ADHD who are not being picked up and not treated and there could be kids um who don't have ADHD but are being treated nonetheless so even there there are questions um but all this to say that there's a lot of uncertainty about who should be treated with ADHD now one question that I want to highlight is why the increasing rates of ADHD prescriptions over time I think there are many reasons for it and some of them were discussed by Steve in terms of the influence of the Pharma industry and direct to Consumer advertising but I think another important factor is this study the multimodal treatment study of children with ADHD which I think is pretty clearly the most important ADHD treatment study that has ever been done arguably the most important treatment study in child psychiatry it's had a huge influence I think there's a lot to be admired in this study um and I think it's important more for the questions that it raises than the answers that it provides um it has resulted in literally dozens if not hundreds of Publications but this finding in the original paper is the one that I think really took hold and has influenced the increasing rates of ADHD prescriptions so although it's a complicated study I'm just going to go through this slide fairly briefly so basically the main goal of this study was to compare two different treatments and their combination or ADHD so one treatment was medication alone mainly involving stimulants the second treatment was behavioral treatment alone very intensively delivered the third arm was combined treatment so the combination of the very intensive closely monitored medication treatment and the Very intensive behavioral treatment and then the control arm was Community Care so these were children who were allowed to get whatever treatment they normally would get through the community and they were assessed along with the three active treatment arms and this slide is for hyperactive impulsive symptoms but the pattern is the same for inattentive symptoms as well as for many other outcomes as we'll see a little bit later so everyone starts in the same place with a relatively high level of hyperactivity and impulsivity and then you can see that there's this clear split where the two treatment arms that included medication through the study so medication arm and combined treatment arm they improved um to a greater extent over 14 months whereas the other two arms and notably the behavioral treatment arm did improve but not nearly to the same extent although interestingly the Community Care are two-thirds of those kids actually receive medication in the community and yet they didn't do nearly as well as the kids who got medication intensively and and closely monitored through the study in fact they didn't do any better than the kids who got no medication alone but got intensive behavioral treatment but the sort of headline from this study is that medication is best and more than that intensive behavioral treatment doesn't actually add very much to medication alone at least for the core ADHD symptoms of inattention hyperactivity impulsivity what is not captured in this slide and often you know relegated to the back pages so to speak is that for the associated problems that often go along with ADHD so anxiety academic difficulties oppositional Behavior social problems parent-child relationships for all of those Associated outcomes which often are the real driver for why families present clinically combined treatment was actually best um but as Steve said you know the drug companies had no interest in highlighting that because they're not in the business of selling um behavioral treatment they're in the business of selling drugs so I think that this really drove the increase in prescriptions for ADHD medications over the last couple of decades um and then um about a decade ago um Alan Schwartz who has written extensively on this topic for the New York Times uh published an article that sort of took stock of the MTA and I pulled out a couple of quotes from this article which I think are particularly salient the widely publicized result was not only that medication like ritalin or Adderall trounce behavioral therapy but also that combining the two did little beyond what medication could do alone the finding has become a pillar of pharmaceutical companies campaigns to Market ADHD drugs and is used by insurance companies and school systems to argue against therapies that are usually more expensive than pills but in retrospect even some authors of the study widely considered the most influential study ever on ADHD worry that the results oversold the benefits of drugs discouraged important home and school-focused therapy and ultimately distorting the debate over the most effective and cost-effective treatments so I come back to the question of who should take ADHD medication and one somewhat simplistic but hopefully still useful way is to look at guidelines both on in the UK and in the U.S so nice guidelines that were published in 2018 and then revised a year later said that medication should be offered to children who are at least five years old only if their ADHD symptoms are still causing a persistent significant impairment in at least one domain and then importantly after environmental modifications have been implemented in review so they're saying that every kid should get behavioral intervention first and the kids who still have significant impairment those kids should get ADHD medication in the U.S though at least according to the American Academy of Pediatrics the threshold is lower so there they say that for children 6 to 11 ADHD medication should be prescribed regardless along with behavioral treatments for adolescence the threshold is even lower for ADHD medication because the emphasis is on prescribing ADHD medication while training and behavioral interventions are encouraged um but not um more strongly recommended than that all right so let me come to the second area of uncertainty which is is ADHD medication effective in the long term um so I was sort of tickled when I learned that Steve was going to be on this panel because for years I have shown this quote to my students which is that the key Paradox is that while ADHD clearly responds to medication and behavioral treatment in the short term evidence for long-term Effectiveness remains Elusive and Steve said this in a paper close to a decade ago and I think that it remains uh True to this day so to follow up on this I know this is a little bit of a busy slide but I'll try to take you through it these are long-term outcomes from the MTA study now the graph that I showed you before was the acute randomized portion of the study so for 14 months the kids remained in those randomized groups after 14 months it became a naturalistic study and people did what they wanted some kids who had been taking medication through the study stopped it kids who weren't picking medication because they were in the behavioral arm they started medication and by eight years out there weren't significant differences in the rate of medication use based on the original random assignment and what you can see is a pattern for multiple outcomes so not just hyperactive impulsive symptoms which I showed you earlier but also inattention oppositional defined symptoms aggression um just overall impairment which is that after the active treatments stopped in terms of the randomization through the study and everyone could do what they wanted the differences between the original groups attenuated by 24 months and completely collapsed by 36 months so that by three years out and continuing through to eight years and later data showing continuing through 16 years there was really no difference based on original group assignment um this graph is the one that's not like the others because this is math and this shows that even in the acute period um taking medication through the study did not help math um that treating ADHD is not enough to improve your math scores presumably you also need uh tutoring um or special Remediation in math if that's an area where the child is struggling so there was a recent uh or at least a relatively recent four years ago debate on this question of whether stimulant medications for ADHD are effective in the long term and there were two authors who commented on both sides so against this notion was Jim Swanson and he argued that long-term Effectiveness may not be significant based on different kinds of data so uh randomized controlled trial observational and register studies patterns of Medicaid medication use in clinical practice and basically what he's pointing to here is that most teams eventually go off their medication the reasons that they give for stopping their medication which is often that they feel that the medications aren't working or cause intolerable side effects um and the fourth reason was the possibility of long-term tolerance now arguing for this proposition that there is long-term efficacy uh was David coghill but I have to say this is the most lukewarm for argument that I think I've ever seen in a debate piece so this is how he formulates his argument does this meaning the MTA long-term findings mean that ADHD medications are not effective in long-term care it might and those who do not support the use of medication to treat ADHD are quick to jump to this conclusion I suspect however that these data are telling us not that the medications do not work but that we are not using them effectively so hardly a rigging endorsement it's more mostly his suspicion that if kids were treated long term in the same intensive way with medication that they received during the first 14 months of the study that we would see the longer term outcomes but of course that's an open question and in fact I think there are two key questions here one is if patients were to receive MTA style medication titration and monitoring in the long term would they in fact experience long-term benefit or would all the other factors um social factors um natural development life experience um and so forth would those still overpower um the effects of intensive medication treatment If This Were true that intensive medication treatment in the long term would confer long-term benefit the question remains Is it feasible to provide long-term MTA style medication titration and monitoring in the real world so finally what are the long-term harms of ADHD medication um you know lots of questions here the effects on growth the effects on brain development effects on cardiovascular health stimulants are known to increase heart rate and blood pressure usually by small amounts in the short term and and also in the case of heart rate those elevations persist but what does that mean clinically in terms of cardiovascular health do they increase the risk of developing a psychotic disorder developing bipolar disorder there's a controversy about the risk of suicidality with stimulants and what about tolerance I've had quite a number of patients over the years where their parents tell me that when the child is off medicine their ADHD seems to be worse than a baseline before they even started the medicine is that recall bias or is there a tolerance effect that is happening so um each of these questions could be a talk in itself um but I'm going to leave you with just some of the data on the effects of stimulant treatment on growth and again these come from the MTA so in the long term um studies um when the individuals were now young adults in their mid-20s they compared not by original randomized group assignment they compared the individuals who had consistently taken medication throughout their childhood and Adolescence to the group who hardly took medication at all for that decade and more and what they found is that in the first three years there was a two centimeter decrement in height in the individuals who had taken medication consistently now at that point there was the hope that those kids might catch up later on but in fact the more recent data looking at final height found that they didn't actually catch up in fact they had even more vertical growth suppression um totaling about four centimeters now again this is actually in a minority of individuals who consistently took medication for over a decade it was only about seven percent of the entire sample and I think very intriguing is that despite the common phenomenon of appetite suppression and weight loss in childhood as adults these individuals who had taken medication consistently throughout their childhood and Adolescence were actually four and a half kilograms heavier uh than individuals who had not taken medication during that time so I'm going to end there I'm sorry I think I have gone a little bit over but hopefully that was useful and happy to take any questions Daniel thank you very much um really interesting data you presented so um we'll come to Allison in a moment what you to summarize what you're saying you're saying the trial that you you discussed there there was it demonstrated benefits under trial conditions at 14 months over that period but over a longer period of follow-up when trial conditions were no longer applied um that effect disappeared essentially um and then when you look at the adverse event the adverse effects of taking stimulants long term there are particular ones there that you highlighted is that in a nutshell what what you're the summary of what you said yeah I think that summarizes it very well maybe with one small um clarification yeah I think the negative impacts on growth have been most clearly studied and articulated I think the other potential long-term impacts are more question marks um so I I think it's those are those are known unknowns in my opinion yeah and in that study that you just mentioned where there was it seven percent of of children did continue to take the treatment uh drug treatment what what about their symptoms in relation to ADHD was is there any what was the long term yeah so that's also fascinating now you have to appreciate a court that these are self-selected groups so it's costing a randomized trial um there was actually no difference in ADHD symptoms no matter which comparison you looked at so one comparison that they looked at was individuals who had taken medicine either consistently or inconsistently for that decade and a half and compared them to those who had negligibly use medication no difference in their ADHD symptoms they also compared the group that had consistently taken medication versus the group that had taken medication but inconsistently so less than half the time um and again no difference now one important clarification is that when they were rating the symptoms if an individual happened to be on medication their symptoms were rated on medication so you know you could argue that the people who were still taking medication especially consistently maybe their symptoms were worse and therefore they were still benefiting from the medication uh since their symptom level on medication was no different than the individuals who were not taking medication or were taking it less consistently um but the simple answer is they weren't able to find any differences in ADHD symptoms no matter what comparison they looked at I think it's also interesting that only seven percent continued to use medication consistently and I think that there are interesting questions about why that's the case in terms of the benefits experienced by those individuals the side effects but also Health Systems issues you know as a child adolescent psychiatrist I have a real challenge transferring care to adult psychiatrists who feel comfortable managing and modern entering ADHD and ADHD medication and so I think a number of patients they just sort of get lost to follow up because of the way our mental health systems at least in North America are structured okay thank you I'm going to sanitize them quickly before we go to Edmond hello I know you've appeared uh on screen Allison um again you know lots of questions coming in um can you pick out one at this moment for Daniel well there's some interesting ones asking about um the use of drug drug treatment for ADHD and subsequent use of illegal drugs or addiction or substance misuse disorders so I don't know whether you have any data on that at all whether it reduces increases likelihood yeah so that that almost feels like a planted question because although I focused on growth the um the question around substance use outcomes um is one that people have long thought about but now we actually have new pre-cut data so I think that this is dare I say no longer a Known Unknown I I think we actually have good data about it um and the short answer is that data both from the MTA that was just published earlier this year as well as data from meta-analysis has found that stimulant treatment in childhood neither increases nor decreases the risk of later substance use now you can find studies that will show A reduced risk of later substance use and early on I think people latched on to that finding and there was a kind of lore that one of the rationales for treating children with stimulant medication is to prevent later substance use but I think now the preponderance of the evidence is pretty clear that it doesn't decrease the risk of later substance use but also reassuringly it doesn't increase that risk either and I think a lot of parents are concerned about their child you know becoming drug addicts if they're treated with stimulant medication I think that we can fairly confidently reassure families that ADHD medication doesn't increase the risk even if it doesn't reduce it either food and nutrition and processed foods and metabolic syndrome and whether there's any association with ADHD and whether there are any studies looking at changes in diet on that or a medical and the association between metabolic syndrome that's one uh do you want to answer that one yeah let's take let's take that one then we'll move on so any interventions any dietary interventions that are beneficial Daniel you know I could answer it but I wonder if Edmund might be a better place to answer it I think that's really in his wheelhouse and probably part of his talk and I I don't want to uh yeah we'll give you that so Edmund why do you store that and come back I'll store that because I'm not actually going to talk about it but I can talk about it after my presentation another one on non-stimulant medication and the potential role of that could you explain could you expand on that non-stimulant medication and also the placebo effect so there are a few on that one as well coming in sure um so I'll take the last one first the placebo effect for stimulants for ADHD is actually relatively low um so by comparison if you look at the response rate of ssris for adolescent depression it's respectable at 60 or at least it seems respectable Until you realize that the placebo response rate uh for adolescent depression is 50 um so that's a difference of only 10 percent and it results in a number needed to treat of 10. for stimulants though for the first stimulant that you try the response rate is roughly 70 and that's what was found in the MTA whereas the placebo response rate is quite a bit lower I've seen estimates ranging from four percent to 30 percent um so there's always some Placebo response um but I don't think it's as big a factor uh when it comes to ADHD medication as opposed to antidepressants for depression certainly um in terms of stimulants versus non-stimulants stimulants are usually first line for a few reasons um basically they work better their effect size is greater and the response rate is greater also they work right away um and they can use they use flexibly so you can start them and stop them easily you can use them during the week and not use them on weekends um and I think families often appreciate that control and flexibility on average non-stimulants and I'm referring specifically to atomoxetine uh trade names for Terra or the alpha agonists so clonidine and guanfacine and although it's not approved or as well studied it's also bupropion um they have smaller effect sizes in the case of atomoxetine and Alpha Agnes about 0.6 and they typically take weeks to months to bring about their effects um but they have their place in the toolbox not every patient will respond to or tolerate stimulants also non-stimulants provide continuous coverage throughout the day and so for children who have a lot of difficulty early and late in the day when they don't have stimulant coverage a non-stimulant can be useful and also they have a different side effect profile non-stimulants do and so for children who are having a lot of trouble with appetite suppression weight loss that can't be managed although often we can manage it but if it can't be managed a non-stimulant might be a reasonable consideration great thank you I'm gonna have to move us on Alison thank you for those questions and those uh Daniel thanks a lot we'll be we'll come back to you in the Q a uh the group q a at the end but now we're going to go to n Edmund sanuga Bach and admin is going to talk about psychological therapies um so um and you know what they might mean for for people with ADHD um so Edmund is Professor of Developmental Psychology Psychiatry and Neuroscience at King's College London Edmond thanks Cameron um good evening everybody so the search for an effective um non-pharmacological alternative for the treatment of ADHD it's so far it appears to me a story of noble ambition which has been dashed on the rocks of rigorous Empirical research so we've learned a lot from this research Daniel's talked a bit about the MTA study for instance over the last third 30 or 40 years but we are little the wiser really about what we should recommend at least in terms of psychological interventions so what do we know what are our known gnomes um well first of all we know that medication and Daniel has said is not a complete answer for patients with ADHD and as he said the Magnificent MTA study highlighted the way in which ADHD impairment persists irrespective of Prior exposure to medication secondly we know that psychological interventions are recommended um by guidelines groups such as nice um as part of multi-modal treatment strategies alongside medication thirdly we know that a wide range of psychological interventions have been tried in the treatment of ADHD some have focused on supporting parenting others have targeted the brain more directly such as cognitive training or neurofeedback others have taken a more psychotherapeutic approach or risk or focused on development of particular skills which are impacted by ADHD Funk related dysfunction fourth and most disappointingly from my point of view as a psychologist is that rigorous metra-analyzes are randomized controlled trials limited to well-blinded outcomes with low risk of bias do not support these interventions in terms of ADHD symptom control however some of these interventions of course have other benefits particularly in the areas that they're targeting in terms of say specific functions say social skills improve ADHD kids social skills for instance others have no apparent other benefits hard to find the benefits of neurofeedback for instance um and now this is all becoming a clear at a time when there's increasing cause for reconceptualization of ADHD and um uh attempts to rethink the purpose of psychological interventions but also interventions more generally for ADHD now all this together leads me to conclude really that there's an urgent need to reconsider the purpose of psychological uh interventions and in this short talk I'd like to focus on three uh aspects of that reconsideration I'd like first of all to focus uh or discuss the reframing of the purpose of psychological and indeed not and indeed pharmacological interventions in the treatment of ADHD uh brought about by this call for reconceptualizing ADHD from the neurodiversity movement and secondly I'd like to discuss the refocusing of our intervention strategies um that are implied by such a reframing finally I'd like to focus on the whole issue of heterogeneity of ADHD and the need to Target uh intervention strategies to the specific circumstances of patients an area we haven't discussed yet I don't think so in terms of the first part in terms of re the reframing of the purpose of interventions for ADHD in particular in this case psychological interventions we can phrase this reframing in terms of the recent calls for a paradigm shift um uh brought about by the neurodiversity perspective from understanding people with ADHD as neuro disordered and in need of treatment to understanding them as neurodivergent where their variations in action and thoughts have value in themselves and that they are supported to thrive as individuals um and we can think about this Paradigm Shift um diagrammatically in this way so in the disorder Paradigm supported by the medical model and instantiated in a DSM five now diagnostic manual we assume that ADHD is a result of brain dysfunction that is expressed as disorder which by its very nature leads to impairment in terms of its negative impacts on everyday life of course the intervention the purpose of intervention here is to fix the dysfunction uh reduce the disorder and particularly could say the symptoms are focused being on symptom control which in turn by its very nature should uh resolve the impairment and improve the functioning now of course the neurodiversity Paradigm turns this all inside out so that we talk of brain atypicality rather than brain dysfunction we talk of differences in thought and action rather than disorder that then relate to or bring about certain certain experiences that may or may not lead to positive versus negative outcomes as a function of the context or the environment in which these people people with ADHD find themselves or or are placed so of course here the intervention purpose from this Paradigm this this alternative paradigm uh is very different no longer the focus on brain dysfunction and the control of symptoms but rather the promotion of positive outcomes via affirmative experiences um so the shift from the focus on the the uh neurobiological basis of the condition to the focus on the experiences had by people with ADHD modifying those experiences um and we can think of those outcomes those positive outcomes in developmental terms rather than in in clinical terms and we can think of them or I like to think of them as an arc of growth creating an arc of growth for the ADHD individual so moving from acceptance and Steve talked about removing stigma for instance going through to the individual feeling actually positively valued for whom they are I uncovering their hidden strengths and talents leading to them to gain agency and control in their lives through the development and the promotion of resilience then leading to thriving now of course if we think about outcomes in that way that promotes or broadens our strategy for intervention uh quite uh substantially and certainly reframes that strategy so again I know again Steve Steve talks just talked about this and written a lot about a public awareness campaigns that can increase acceptance the movement to introduce reasonable adjustments into environments that can lead to individuals feeling valued or being valued and their insurance being uncovered the promotion of confidence through the development of skills um that leads to the gaining of agency the careful graded or scaffold representation of challenges that can promote resilience so this is just an example of the sort of intervention strategy that you might think of from a neurodiversity perspective on ADHD now of course other interventions including medication claim can also play a vital role is developmental outcomes it's supporting this this Arc of growth if you like for children but they should be judged on how they promote that growth how they support the gaining of agency and how they help the development of resilience and the thriving rather than just on the degree of symptom control or even on the amount of impairment that they alleviate so the long-term focus and we've talked about and uh Daniel talked brilliantly about the long-term impacts of medication and I think taking a developmental perspective really broadens the focus for our intervention strategies the third point that I'd like to focus on is this whole issue of heterogeneity and we know that ADHD is massively heterogeneous condition of course we've known about this for a long time in terms of symptoms and impairment and that's been our focus and of course we've addressed that by the development of subtypes in attentive hyperactive impulsive trying to partition that heterogeneity now we cause in dsm5 we call them presentations because we realize they're not really stable entities but of course individuals with ADHD don't just differ in terms of their symptoms and impairment crucially from this Pro this focus on contextual factors they differ in terms of the environments to which they're exposed so we could take very broadly say uh from a a a socially depriving environment versus a non-socially depriving environment they also differ enormously We Now understand from brain Imaging studies and laboratory neuropsychological studies in their underlying neuropsychological processes so for instance the kind of headline story would be that a large minority of individuals with ADHD show no evidence of executive dysfunction on laboratory tasks now these factors have never really become been properly considered in the planning or the implementation of psychological interventions or to a large extent uh pharmacological interventions either but they do give rise to very different intervention needs and so we need to tailor our strategies and personalize those strategies to meet the specific circumstances of individuals and crucially our trials to evaluate the value of these strategies our randomized control trials need to stratify by these heterogeneity factors whether they're contextual factors that may or may not inhibit change or underlying neuropsychological processes so very quickly in terms of the research agenda that this kind of radically different way of thinking about ADHD brings I mean first of all we need to identify Which experiences uh promote personal growth uh promote that Arc of growth promote agency promote resilience in people with ADHD and we need to know why that's the case what are the mediating factors underpinning or driving these uh positive experiences what are the moderating factors and we've talked about some possibilities in terms of heterogeneity and experience and psychological processes we need to evaluate these interventions against their ability to promote growth and development and not just to control symptoms and reduce impairment in the short term we need to understand in terms of heterogeneity who benefits from which interventions and in terms of in Practical terms we very much need to think about um how to optimize the timing and the setting of interventions so for instance does early intervention give more traction with regard to psychological approaches uh would supporting families more generally Inc and improving the the family context increase agency and resilience and finally we need to study Adverse Events but broadly considered not just in terms of those Adverse Events that we know are linked to medication but we need to think very much in terms of Developmental outcomes and Daniel talked to give a list of potential adverse long-term outcomes but didn't talk about resilience agency and growth psychological growth so I do think we need to look at the impact of interventions on those and the unintended negative consequences on those sorts of um outcomes as well so thank you very much Edmund thank you very much it took us an hour and 15 minutes but somebody mentioned neurodivergence um yeah we got there could you stop sharing your slides please yeah of course so let me ask you about that first of all um I mean clearly that's a term that's increasingly being used um and you also use the term neurodiversity perhaps you might explain are they the same are they different are they interchangeable and also aren't we all neurodivergent by definition no we're not so I would say no I would I mean conceptually the term neurodiversity is often misused uh in the sense that it really relates to a population and not to an individual so to say you're neurodiverse doesn't really make sense unless your brain is changing from moment to moment then you're neurodiverse a population is neurodiverse an individual I would say is neurodivergent okay and what we mean by that is that they are Divergent uh from the um the north the norm I suppose along any particular dimension in this case we're talking about ADHD I mean most are commonly used of course in relation to autism is where the whole uh movement really really came from but isn't being applied much more to thinking about the rights of people with ADHD as well now I think okay good thank you for that um now you talked about the heterogeneity um and then and then of course there's a range of interventions so how are we going to uh you know push back the boundaries of what we know and don't know um it's going to make constructing studies rather difficult very but I think they are rather difficult I think we've kind of glossed over how complex um because because medication has this sort of generic or say psychosominant medication has this sort of generic effect across individuals probably because it hits so many different brain networks um we've kind of glossed over the issue of precision medicine and tailoring um and we kind of kind of um had a false sense of of the of the challenge that we actually face in terms of getting the right treatments to individuals so I think they are complex and I think they should start they should be translational so we really I think I mentioned we really need to understand at least from the point of your psychological interventions now which environments and which experience lead to long-term positive outcomes and I think that's a whole program of research in itself that we're having to dressed uh because we haven't had this disperspective really I would say okay thank you I think I thought you're reframing actually was really fascinating but I've only called in Alison at this point Alison what questions are we getting they do diet I was going to comment oh yeah do diet and then we'll call you now don't die we know quite a lot about diet I mean in terms in terms of um uh treat treatment studies um I don't know if you remember but in 2007 Jim Stevenson a colleague of mine and and me and myself uh me and another set of colleagues we published a big trial in the landsat where we showed artificial food colorings and flavorings actually did have um a small but very robust impact on ADHD symptoms uh in their next it was a it was a an exclusion trial um and that actually led to the change in the labeling um of foods so it was the I think they're called a Southampton seven actually because that's where it was when we did the trial uh but tartrazine for instance was one of them uh Allure yellow was another of them and that but they did actually compare with the placebo increase the levels of hyperactivity so just quickly what you're saying what you're saying is if by excluding those right excluding those we've reduced the levels of hyperactivity exactly so I mean a very it was a small as I put about 0.18 standard deviation so you know as a clinical at an individual clinical level really rather than insignificant but at a group level it was really quite important now in terms of the clinical trials there's two areas there's obviously supplementation and that's tended to focus on omega-3 and omega-6 and again there's good evidence I think from multiple metra-analyzes including some of our own in the European ADHD guidelines group that is a small um but statistically significant and very homogeneous effect across studies of Omega-3 omega-6 supplementation small you're never gonna I mean you you aren't going to have a clinical effect at the individual level but again as a kind of a public health intervention quite important now in terms of excluding um exclusion studies whether it's um the Feingold Diet which excludes specific uh provoking food elements um or the removal of artificial colorings and flavorings and the the effects um depend almost entirely on whether the people entering the trial have known food sensitivities okay so as a general treatment for ADHD probably not but in people who where there's a suspected food sensitivity around particular things certainly worth a look okay so again it's your point about tailoring it to the individual very much okay yeah thank you Edmund Alison any particular question I have but I'm aware we're going to Short Change well this is really one for everybody to hold which is of pros and cons of neurodiversity and many people have said are there parallels with the disability movement have we got too much focus on the individual and not enough of the society as a whole so maybe all these questions okay fine let's do that I think we should move on yeah thank you thank you Allison Edmond thank you that was really fascinating we'll come back to you at the end right so next we've got uh Kirsty um we've had experts talking about ADHD Kirsty has lived experience of HD ADHD as a student about to start a PhD and she's written one of our we call them y pits what your patient is thinking article's a very good one about having ADHD and how poorly the NHS makes adjustments for people with that diagnosis um so Kirsty tell us a bit tell us a bit about yourself yeah thank you for having me um yes I'm Kirsty I'm 24. um I was diagnosed with ADHD two years ago now so it was in the final year of my undergrad um and I also have been diagnosed with autism a few weeks ago so that's a bit newer um but I've seen some of the questions about the sort of similarities between them um so I'm doing a masters at the moment on athlete mental health and I'm going to be going on to a PhD and then other than that I just play a lot of sport so my life I don't really sit around um because yeah it's what's been a helpful way for me to manage my ADHD so you'll either find me studying or playing sport basically yeah so you find it helpful a bit like you know we were talking earlier in terms of the the baseball players we spoke about yeah I thought that was really interesting and um I think when I was younger I played a lot of sport to um like the structure of it helped and everything like that um as well as the activity levels with it um and then when covert happened um obviously we couldn't do things like that which is where my ADHD symptoms got a lot worse because obviously I wasn't I was still doing activity but the structure around my day had been taken away okay and so did that prompt what is that what prompted you to seek a diagnosis um there were a few things it's really obvious when you uh live with me I'm gonna make myself sound like a terrible housemate now but um in uni in my second year of uni a friend was like have you ever been diagnosed with anything I was like no um she was have you heard of ADHD and I was like yeah but I don't have it because I think for me the name um disorder and like potential deficit hasn't been particularly helpful because from I've done quite well in school education things like that and I've managed to just keep up um but then another friend when I came back from Australia for a study abroad year was like should we just do a few questionnaires together online um and I pass the flying colors so um that kind of prompted me to think oh maybe I have it um I looked into it a bit online um not really on social media to be honest but um like listen to some podcasts and then I could actually self-affair I called the GP and then I could self where I'm located so that kind of prompted it but it's mostly obvious when you live with me when I lose things I am chaotic but it's better now but I'm on medication wow so it was your friends that prompted you to to kind of look into it more do any of them have a diagnosis of ADHD um no well I think um not the ones that asked me but actually since being diagnosed um there's been a few people that I'm friends with I didn't realize and I think maybe that's a you know because we feel more comfortable together um also I'm friends with lots of people who definitely do not have either ADHD autism so yeah sure this makes sense and for you what was the pros the process of getting diagnosed like how did you find that um I feel like I've been very lucky and mine's all been through the NHS um and I actually so I went to the GP didn't have any problems there um where I'm located is an 18 to 25 service for mental health like services and so I could self-refer for an ADHD diagnosis um but the weight for that was like a couple of months to get your first phone call um and because I did it in covid they did the questionnaires on the phone with their ADHD nurse I believe um which was really interesting I think um I wasn't really I didn't really understand what ADHD was but you learn a huge amount about yourself from doing the questionnaires like the self-awareness you're like oh my goodness is that ADHD is that me like you don't know whether you've passed or failed or whatever um and then so I did those over probably about a seven month period um and my mum also did a like a childhood one because some of the questions are focused on like comparing to when you're seven years old and memory is not necessary on my side so I could not remember other than what people had told me what I was like when I was seven so that was really helpful um and then I just had an in-person appointment I think my psychiatrist is actually here listening so Dr Sammy shout out but uh yeah so and then that was it that by that point they'd kind of collected everything they needed to and it was just going through everything um but yeah and you've had treatment are you are you able to talk about that yeah for sure yeah um it was interesting to hear the talks about the medication so I've tried I'm going to try and remember the like I remember them as the actual names but so I tried methylphenidate which is also named as Ritalin to start with um I was very resistant to go on medication I should say so talk to someone no I was a bit stubborn it took me a while I sent her an email with 15 bullet pointed questions um because yeah I think it's a big decision to go on to something like that um I didn't get on with the stimulants um sorry about tried both of them methyl final day and Liz decks amphetamine and I'm now on a non-stimulant atom Augustine um because I struggle with side effects um with the stimulants so that's what um I think Daniel was saying um and I prefer I think with the autism side of things the continual uh having it in me the whole time and I struggled with the stimulants like on off switch um which I could definitely feel um so yeah I'm on atomox team still get playing around with the dose because I've been a bit stubborn to go up because I don't think I'm ADHD enough to Warrant going on the dose I'm supposed to be on from a medical perspective um but we're still going with that and I'm also on Sertraline to manage my autism side of things so I think that's quite common to go on a combination yeah okay I mean I think whatever works for you I mean your psychologist is here you've said so but I think and but tell us that your conversations with your psychiatrist and YouTube how have you found those have they you know how how have those discussions gone yeah I am what to do yeah largely I haven't had to be very involved with my G my GP and I know that's quite uncommon just to the way I self-referred I know people do have issues or good bad experiences with GPS um but yeah my psychiatrist has been super helpful at we've discussed absolutely everything often multiple times because I um can be a bit oh come back every time I'm like have you got a genetic test I can do yet um to prove it so but yeah it's been super helpful to sort of go through the medications and the positives and the negatives and weighing those up but um although it took me a long time I think for me being on medication has just really helped me to actually Implement like other strategies and what everyone was talking about maybe other not necessarily interventions but for me in my life I didn't have the ability to implement those things without necessarily being on a medication okay gosh I mean Lots happens um how are you living day to day now um yeah it's a it's an interesting one there are ups and downs I suppose with anything um I'm definitely more like level now that I'm on medication but I do have days around well even within a day like super super up um and hyperactive and talking really quickly I'm aware I'm probably talking very quickly right now um but then also days where I'm completely wiped out um so I'll now I've have an ability to nap because I can quiet my brain down um but uh yeah day to day is fine I've I think a big thing for me was accepting accepting the help um because I thought I'd done okay in education and everything like that um I didn't want to didn't feel like I should should accept help but now I have like a mentor at University is really helpful supervisors who are aware um I live with a housemate that's really helpful tries to help me I remember things as I leave the door um and just yeah slowly running it takes a while and I would say that I've only now after two years like accepted it and yeah so getting there oh well done thank you but let's go back to his piece you wrote which I thought was really excellent for us um and you talked about the NH test and how it wasn't you know fit for people with your diagnosis and could do more what were the what were the key points of that yeah I haven't actually written the piece yet because uh it's it's coming that's how I got invited to this but it was about my experience of um having some surgery um in the NHS and how I actually really struggled with uh sort of like my black and white thinking not necessarily understanding what the clinician was saying um and actually was surprised that they hadn't heard of my medication um they were eventually like very accommodating I had my own room and things like that I think one of the major things for me was the consultant saying oh you'll be back on the hockey pitch after two weeks so I was literally like trying so hard to like increase my activity levels after having this what was it major surgery yeah source of major surgery um and I think that's where sometimes the communication style kind of got lost um and where that would really have benefited me having stuff maybe written down as opposed to on a phone call like remember to bring this and this and this um yeah I think that was it okay well that's great listen obviously yeah you have we look forward to seeing the final people I know what you're going to be talking about I think that's really excellent listen thank you so much for sharing your experience for us with us I think it's really valuable and some of the comments I'm seeing on the chat I think people have found it very uh moving very inspirational I think to you for sharing um you know your experience with ADHD but you'll stay with us won't you for the yeah thank you for having me as well no you're welcome thanks Kirsty right let's move on to our next speaker um who is Elia abbaud and we started off by thinking about known unknowns um and somebody one of the speakers did mention Tick Tock and I know you've been mentioning it in the chats a lot of you um so this phenomenon of ADHD talk um and how that's feeding self-diagnosis and then clinical referral uh so to talk about that and Associated impacts um over to Alia who's a assistant professor and food investigator in the school of Psychiatry at the University of Toronto hell yeah all right uh thank you uh thank you Cameron and thank you everyone uh the the fellow panelists but also all those of you who are attending there's not a lot of time left so I'm going to be quick I'm going to talk probably almost as fast as Kirsty um it's been brilliant talks that everyone has seen and I think it's it's a good way to end with this last talk or hopefully we'll have time for uh discussion uh Dr tapar started us with some history and and then I'm ending with some of the current so this is a relatively fairly recent phenomenon that's been going on in terms of the impact social media there's a lot of unknowns there and hopefully we'll we'll be able to chat some about them to tell you just a couple of things quick things about me so I work my main area of uh focus and expertise is in Tourette syndrome and so as a result of that I see a lot of patients with not just threat syndrome but also ADHD and I often do make this diagnosis I I do prescribe medication and other interventions for ADHD at the same time I also work in a different setting on an inpatient unit where I see adolescents that are struggling with various mental health issues that typically affective difficulties and I've been as a result of that I've been able to witness some of the the increase in in the uh numbers of adolescents that are having such struggles and I've been very curious about the impact of social factors in this and in particular social media all right I don't have any Financial conflicts of interest to this post I'm going to start by showing uh people this this is a graph this is from the CDC in the United States national syndrome surveillance program that looks at the weekly emergency department visits for various things and this graph is in particular is particular from my area of focus so and in the solid line is females and the dotted line is named and then around this time Point here so early in the pandemic we see this massive rise in the numbers of females presenting to the emergency department not just having picks but so problematically representative of the immersion Department in females in particular and I was seen as a thick specialist I was I was seeing this and I was very curious I was very perplexed about it I was actually doubting myself I was starting to question my own uh clinical diagnosis diagnosis approach as I was seeing these patients and and and and at the time I didn't know that this was something that was being seen elsewhere it was in my own little world here in Toronto until I saw this article fix Tick Tock and coveted 19 and and talk about the group and in London England who have been who were having similar experiences and since then there's been dozens and dozens of papers published specifically on the massive rise in number of patients presenting with ticks and I'm sure within quotes text uh often in the emergency department often very severe and impairing and when and often receiving a diagnosis of a tickle disorder particular Tourette Syndrome severe Tourette Syndrome however with an un with a trained eye and trained by by an experienced specialist they will say these are different than typical texts these are what we call functional decline behaviors so this is not a new phenomenon in the sense that this often happened around the world in different places of young people experiencing things because they're seeing other young people having similar uh kinds of behaviors however in the context of social media that is global this did become a global phenomenon and this is something that's happened um uh that's happened it was seen around the world well it's not just text it's many other things and if we look at social media if we look at Tick Tock in particular there are many things things that are trending on Tick Tock and I don't mean to be dismissive of these labels uh as being not real or or anything like that but I do want to say that there's a massive popularity for all of these things on Tech talk and in many cases I'm sure there are positive effects on it it might be lead someone who was struggling with certain things to maybe better understand maybe reach a diagnosis that was not previously recognized however it also may lead a lot of people to start interpreting their experiences in in clinical terms and maybe having labels that might not be the most helpful for them um the I and the other thing is regardless of of whether the label is accurate or not these kinds of experiences often can be quite unfairy and and and the level of evidence in terms of how contagious these things can be is variable but it's suicidality in particular we have centuries of evidence that suicidality is quite contagious and when there's a lot of discussion on that whether it's on the news or social media it can lead to to increase some of our experiences all right so our Focus today is ADHD and in particular the most popular uh social media platform among young people is Tick Tock and this has gotten a lot of attention to pun intended and this was an article in the UK that got a lot of attention Tick Tock accidentally detected my ADHD for 23 years everyone missed the warning signs I do not know this young journalist who works for the guardian uh and I do not know the extent of the accuracy of per diagnosis but it just thought the article was quite interesting there are some quotes from the article that I thought were interesting for 23 years my parents my teachers my doctor my psychologists and my own brain all miss the warning signs yet somehow it only took the apps algorithm a few days to accidentally diagnose me so I booked a doctor's appointment and three referrals four months and about 700 later my new psychiatrist looked straight into the webcam and said yes I think you clearly have ADHD you've had it your whole life well ADHD gets a lot of news on tiktok we did this and and what are what can these venues with ADHD look like we did a study uh published just last year on this where we looked at the 100 uh most popular uh videos on ADHD on Tech talk and evaluated them and they had a total at the time for of over 280 million views which I can tell you that would be several calls more and just over half we were classified as misleading um inaccuracy misleading 27 were personal experiences and 21 so a lot of steps were actually we find we found to be useful I want to say the hashtag ADHD at the time had 4.3 billion views a year later this was over 10 billion views now it's well over 20 billion views this is massive the amount of attention sorry again no pun intended this yes on social media but it's not just exposure to the videos themselves so viewers would see these videos working immediately get targeted ads specifically by private online clinics that that can diagnose ADHD or assess at least for ADHD for a fee and what do these clinics look like how does it work there's a lot that one can talk about this but there's an interesting Panorama program or from the BBC that was made specifically about this where a journalist went to the NHS and got a thorough assessment the kind that Dr tafar would make and cost him nothing and he was told he did not have ADHD and he then went and saw three attended three different of these Online private clinics and share the same symptoms would be the same answers that he gave to the during the assessment that NHS there were various fees they were shorter than the typical nhs's store assessment for ADHD and all three of these where he got a guy known as ADHD and treatment was offered with a drug and it's not just um uh there's a lot a lot that has already been said about the pharmaceutical Industries I will not labor this but this is a recent diet that is quite interesting in particular for adult adhdms that looks like depression sounds like anxiety might be easy it just shows that when we're struggling to understand some of our experiences and why we're struggling it's it's very easy to start to consider different labels and it's it's it's uh it's easy to to to wonder if that explains our experiences what are the current factors that will be going on that could be contributing to ADC diagnosis well first of all ADHD itself is one that's tricky as Doctor Papa told us or you know it exists on a Continuum and it's pretty arbitrarily where where we might draw the line to the to decide that this is normal versus pathological we live in a world where we're constantly bombarded with all sorts of stimulation we could talk at like just about that but we you know this boring um uh baseball game that Dr Hinshaw talks about well we don't even need to be you deal with the boredom anymore it doesn't matter where we are because we of our new gizmos and we can we get our hits of rewards for stimuli anytime we want these same gadgets are highly distracting in anything that we're trying to do whether it's school work or or uh or work the other thing is the the doing schoolwork uh in the in the online and the virtual context does make it harder to focus and complete our tasks uh there's a overwhelming evidence about how uh these uh these gadgets these portable digital uh media devices are are impacting our sleep in a negative way our societies ironically sleep deprived and we know that this does impact our ability to focus on paying attention as a result of all of this and and other factors as well oh we might be experiencing a lot of stress there's increased expectations that we're much more competitive society today even compared to 20 years ago the Dr Hinshaw used the term an achievement-focused Society so we're constantly struggling and feeling inadequate in terms of not being able to complete as many tasks as the person next to us and we might start wondering is there's a reason there's a political reason that can explain this I've talked about this and then and then it becomes very easy to consider uh could this be ADHD and we're bombarded by marketing whether it's on the pharmaceutical industry office or these kinds of products um and so the pitfalls of this are and taking on an illness identity and taking on a diagnosis can be a very useful thing as I mentioned I I do it often and it can make it can be very helpful um Kirsty describes some of the positive experiences from this but it can be also limiting when we think of ourselves as as as having an illness especially when it's uh unwarranted and and the interventions can be harmful we might miss out opportunities in terms of having other um addressing other issues that could be contributing and if we're all flooding or a public health system or even the private for that matter uh with uh because we think that we are a disease in some way or another it can overwhelm resources and make it more difficult to provide the care for the people who especially you know I think I'm the only speaker who's stuck to 10 minutes actually maybe Kirsty as well I will end it here and I'm happy to entertain some questions and participate in the discussion thank you right well done thank you um can you stop sharing thank you let's get all the speakers back thank you very much for that and let's uh get Alison back as well um what I know we're running slightly over time but what we'll do is let's take a couple of questions for the panel Alison's still there and then I want the panel to be ready to give a 20 minute sorry 20 second not 20 minute 20 second uh sort of final thought from each one of the panel members 20 to 30 seconds okay Alison uh a couple of burning questions let's go back to the pros and cons of a neurodiversity diagnosis or just a rather discourse and there's much focus on the individual and not enough thinking about the whole disability movement which I think Edmund was sort of referring to and how that changed people's perception of needing to change the environment rather than the individual so what's the precise question there Allison for the pros and cons of a neurodiversity discourse around okay okay um who'd like to start with that Elia maybe he's on mute are you on mute uh I just I'm using the uh hopefully I think the pro was outlined beautifully by by Dr Saluda bark um uh that uh is is in terms of becoming uh accepting of people rather than pathologizing them and uh you know it's interesting when we think of ADHD as the thing we're talking about today um you know if what what I find often helps with the like uh what the what what the diagnosis brings in terms of benefits is the person especially a younger child not being labeled as lazy scattered uh you know in terms that are valuated and makes the person start internalizing a negative view about themselves however can we accept the person regardless of diagnostic label and I wonder sometimes that you know diagnosis labels change over time in terms of their negativity that they involve uh and and right now perhaps the term neurodivergent is is more accepted than an alternative term but it might unless we become more accepting ourselves more more fundamentally um it won't be long before neurodivergence starts used in a in a derogatory offensive way as well so I'll leave it at that okay thank you Edmund we've still got you before you you're I think pictured on you you're happy I'm sorry sorry I was muted yeah yeah no it's a complex it's a complex it's a complex issue if you if you notice and I'm torn um between between the fear of utopian Visions which often this the neurodiversity movement uh uh slips into and the truth is that um environments that are forgiving or supportive of people with ADHD um oh can be manufactured in certain settings is very difficult to um manufacture in a big bad world and so if you notice within my arc of growth uh the fire the the the the the second to final forgot what you call them second to final element was resilience yeah I do think it's not just about acceptance or valuing it's actually promoting resilience so people with NHC can function in Worlds that aren't in in environments that aren't sympathetic uh to them okay would anybody else on the panel like to comment on this Anita uh panelists please unmute I think it's fine to unmute so you're ready to speak when I come to you Anita and Edmund and I have written on this and I think we need both Concepts I think I think either or is not is perhaps not helpful so for some purposes diagnosis are helpful for clinical decision making um a lot of families and individuals find having a single diagnosis rather than you know um I.E ADHD rather than and autism rather neurodivergence helpful to know what sorts of support groups they can join Etc but I also think the neurodiversity movement is really important in terms of acceptance and optimizing people's um functioning and in a way that is what our clinical work is is actually optimizing functioning in different ways but I don't think we can just dispense with one or dismiss the other okay anyone else before we take another question there's a journalist um for the New Yorker Rachel Aviv who has written about mental health diagnoses I think very insightfully and although I think her work is is very nuanced it sort of can be boiled down to this one statement that I found very powerful and which I actually used now clinically with families and she says that when it comes to mental health diagnoses there are stories that save us and there are stories that trap us and I think it's important to have a transparent conversation with families that if we give a diagnosis or if we think of you as being neurodivergent is that a story about yourself that saves you in some way that helps you understand yourself in a way that is helpful and meaningful or does it trap you does it kind of confine you to seeing your identity through a particular lens that is actually limited and I think the answer to that question is obviously going to be different for different individuals but I think raising the question of what is the meaning of the diagnosis and how does it affect your view of yourself I think is an important one um that we as mental health practitioners should not shy away from okay thank you I think we're realizing if we didn't already why this is a perfect topic for a Known Unknown unknown's webinar um Allison another question please well this is a common question for lots of um disorders um really and it's about boundary injuries so if ADHD is a continuum should in given scarcity of resources should we be seeking to diagnose everybody or only diagnose those with more severe symptoms so it's probably coming back to Anita about this boundary question thank you Anita I think it's an interesting question and yeah I think for me is I mean well in terms of the epidemiology there doesn't look like a sudden cut point where people look really different with ADHD so that's the you know the logical thing that isn't a tight boundary as such but on the other hand some of the interventions you know there aren't um there aren't consequences to not having a diagnet you know to not to making a diagnosis as well so having the label the psychological impacts of having a label the meaning of the label if it becomes so Broad and also the risks benefits of different treatments so particularly when it comes to medication um one would want to be really careful about diagnosis because you don't want to sort of you know your risk benefit ratio starts starts becoming more problematic so yeah I I I think it's an interesting question I don't think we know the answer I mean maybe our thresholds do need to change in in modern days we don't know that but at the moment we're talking with what we've got at least I would ask Stephen Stephen you I mean your focus was diagnosis what do you think of this and I'll ask courtesy whether it's helped having a a diagnosis Stephen you asking me yeah yeah so um I'll make a quick comment uh most of you are competing with of the lead cocktail hour I'm competing with my late morning appointments that start in 10 minutes I'm gonna if I could have a moment um to cross-cut a number of questions and comments that people have made I found this is really fascinating number one the mta's primary outcomes were pre-selected as the symptoms of inattention and the symptoms of hyperactivity and pulsivity if we had been smart enough to pre-select other outcomes like friendships and peer status reading and math achievement improve parenting skills and internalizing and externalizing comorbidities Connors at all 2001 an alternative outcome analysis showed very clearly that only the combined medication plus behavioral psychosocial condition led to significant improvements in the other five Beyond ADHD symptoms so in some ways the choice of primary symptom outcomes has misled the field for the last 23 years or more into thinking that medication is the only thing that helps with ADHD if you want quick symptom relief there's nothing like a stimulant if you can tolerate the side effects and find the right one and of course with Precision medicine which we're lacking we don't know which the right one is so it's a lot of skilled uh practice on the for the doctors to find the right mid and the right dose but for impairments Beyond ADHD symptoms adding organizational skills not the ABA from some of the comments uh coordination with teachers better reward programs having people fulfill their potential with as Barclay pointed out Mixed cues rather than assuming that everyone can can manage a Time budget as well number two just last week Molina at all I was a co-author published long-term findings from the MTA showing that no matter how many of eight trillion covariates we put in there was no long-term risk for greater substance use for the people with ADHD in the study who use medication versus not you can I mean it's always unaddressed variables but um this point was raised an hour ago and just wanted to say that um third what about long-term medication effects another way of doing this isn't just to look at long-term follow-up to see who stays on medication or not but to do what the Scandinavians do have access to every school grade and medical visit and medication prescription in a person's Lifetime and when you look at that series of studies for the six-month periods in which adults with ADHD are on medications their risk of serious accidental injuries is cut by 50 percent the risk of attempted suicide or self-injury is cut by a quarter etc etc so we need different ways of understanding the benefits of long-term medication for people who might need them number four and I'm almost done a meta-analysis published in 2020 by Coke at all k-ok uh looking at male female differences in response to ADHD treatments the the evidence was pretty underwhelming there are very much similarities except that females tend to have on average these are girls and women across age span more side effects to stimulants than men and have a preferential response compared to men in terms of the non-stimulants uh the snris or the alpha II antihypertensive medications and then point number five the final one because yeah the the the the the Precision medicine is the goal it's happening in cancer um it's happening in other forms of medicine the brain is arguably infinitely more complex than most organs or most sets of proliferating cells but in terms of neurodiversity and in terms of treatment individualization we still don't know much Beyond group averages as to who responds to what but that's the Holy Grail so thanks for my moment for a summary because I know he's got to go we'll continue with final comments now Edmond how would you like to wrap up final comment oh God um final comment um resilience build resilience that's what my final comment is uh in people with ADHD okay thank you Kirsty I said go go to final thoughts and also about whether it helped you having a diagnosis um yeah it definitely has helped me um I went through a period of hating it but I um I've accepted it now um and yeah it's just helped and I'm hoping that will help future me as well I think that I may not have known the benefits now but hopefully as like you know there's services and things that I can um access and then my final comment is I think when you see an individual with ADHD you're seeing and you're currently seeing the masked version um so I had a question about like why I take medication as an achiever but like you're seeing me on the on the top form you don't see the challenges that go with that so I guess that's just something to bear in mind well good well thank you for sharing your your top form with us it's been good um Daniel so Edmund boiled down his final thoughts to one word which was Brazilian space so I'll do the same I think my word would be uncertainty you know I think that we need to not only feel comfortable with uncertainty but to embrace it and as a clinician I mean that is the challenge but also the joy of doing this work and I think being transparent with families about the uncertainty and working through what we know what we don't know and trying to find a path that is best for them um based on what we know um you know that that's the journey um and I think that you know as in so many areas of life it's the journey that that is is most important um so those are my final thoughts right thank you um Anita is Anita still with us perhaps not an Ali is gone as well okay well I think we're gonna we're going to wrap up Alice is anything final from you before I finished thank you okay listen thank you so much to all our speakers I think it's been a really fascinating two hours so I'm really appreciative of the time and we've had some really fabulous comments actually really interactive um session going on in the chat so that's been really interesting watching that as well um where are we at well I think we know we learned a lot about what is ADHD um we then also learned about um you know what's influencing diagnosis and there was a there's a bit of a debate around whether in certain places uh there is over diagnosis and in other places there might be um an appropriate um recognition of ADHD but I think there was at the overall sentiment to me seems to me that there is a drive uh to over diagnosis when it comes to the evidence I mean Daniel you talked about the about the many uncertainties that word again around uh drug interventions and so there's a lot more work to be done particularly to understand the long-term impact um of the drugs that are that are being used and I guess there's a similar question around some of the psychological therapy is that Edmund spoke about and he'd spoke a lot about tailoring things to the individual and reframing uh the discourse in a more positive light we heard from Kirsty which I thought was a very valuable and inspirational um session so thank you Kirsty for that and earlier described the impact of social media on self-diagnosis and then the constant impact uh on on clinical care so I think it's been a very excellent um Known Unknown session I'm grateful as I say to all our speakers to our participants uh to everybody who's joined and tuned in and listened to us to Alison Pollock and to George Xavier Smith for putting this together with my colleague Duncan Jarvis so we'll be back soon um we're keen to hear from all of you and if there is topics that you think we should be covering this series please let Duncan Jarvis know if you have any suggestions uh you'll be getting an email from him soon with links to the record recording so you can send them to him there so that's it for this Known Unknown seminar thank you very much for listening the recording will be available very soon on bmj.com stroke known unknowns and I'm assuming it's going to be on YouTube as well and also their lookout for our previous webinars thank you again for your time

Channel: The BMJ

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Id: mDoyg2L9v4g

Length: 132min 29sec (7949 seconds)

Published: Fri Jul 28 2023