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Episode 22- Quality of life with Alessio Bellato
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We are joined by the excellent Dr Alessio from Southampton Uni. We all give treatments because we think they will help people- but do ADHD meds fit the bill?
Let's find out!
Here is the paper: Systematic Review and Meta-Analysis: Effects of Pharmacological Treatment for Attention-Deficit/Hyperactivity Disorder on Quality of Life - PubMed
Alessio's details can be found here: Doctor Alessio Bellato | University of Southampton
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Transcript
Introduction and Hosts' Background
00:00:07
Speaker
Hello! Hello! Welcome to the ADHD Science Podcast. I'm Tess Davie. And I'm Max Davie. We got through it. I know. You know what you introduced yourself first. Yeah, that's true. It's been a while as well, hasn't it? Since we've done the last episode. It has been a little while. It's the festive season now. It is very much the festive season. I'm not working until Christmas.
00:00:27
Speaker
I'm working constantly until Christmas. You are constantly working. I've been candying peel. I've been going to make the Christmas capes today. So it's all very festive around here. But just before we dive into the festiveness, totally we have one more episode to put out for you lovely people.
00:00:43
Speaker
Well, it's like a little Christmas gift of our own. It is. It is. Very much. And what I basically, it's another one where I did the interview because Tess was working.
Interview with Alessio Bellato on ADHD Research
00:00:53
Speaker
I sure was. And it was with Alessio Bellato from the University of Southampton. Now, Alessio is very nice chap. I don't know why that's relevant, but he is. Sure. And he has done, he does lots and lots of different research. But what the thing we talked about was, so When we focus on whether things work with ADHD particularly, we focus on the symptoms. So for example, does it make a person less hyperactive? Does it improve their concentration? shot does you know Blah.
00:01:30
Speaker
What Alessio's group did is look at how, what it it's not original research, it's ah it's a kind of review of the of the literature, how much we know about what effect drugs have in ADHD on quality of life, which is much less, well... documented but surely quality of life is symptoms right well not necessarily if you're presenting less symptoms of let's say overly like over emotional sense a bit like sensitivity yeah then that will improve your quality of life and same thing with like um i've lost the word it may well do but then again if you also have side effects then your overall quality of life may be the same or even worse
00:02:12
Speaker
So just focusing on symptoms sure so can lead you into a bit of a tunnel vision.
Quality of Life in ADHD Studies
00:02:17
Speaker
That's my view clinically, that i think it's I actually think it's very important to look at quality of life and I don't think we do it enough. Well, let's find out more in the episode. episode Shall we? Shall we?
00:02:33
Speaker
So welcome Alessio. Thank you very much for joining us this evening. Thanks for your invitation. Cold November evening in the UK. um um So we're going to talk today about some work around ADHD medication and quality of life. So the first question, as it always is at the ADHD Science podcast, is what is the question you were answering? Yeah, thanks very much again for the invitation. And yeah, I'm very happy to talk about this topic, which, you know, and since the publication, we got a lot of discussion about the topic itself, you know, quality of life,
00:03:12
Speaker
and why quality of life in relation to ADHD and medication. And so everything started basically a few years ago when we we have taken a look at a database of like some kind of data that we already had before collected um from different randomized clinical trials you know conducted to test the effects of medication.
00:03:34
Speaker
And if you think about medication for ADHD, a lot of these studies actually has a focus on primary outcomes, which are ADHD symptoms, right? But we know that the picture is much more complex and, you know, the the ultimate ultimate goal, you know, as a parent or as a person with ADHD, you know, you are told, okay, take this medication and you may ask, you know, does it work? yeah no Can it improve? Not just the symptoms, right?
00:04:01
Speaker
But also how I perceive the environment, how will I, you know, my social interactions. And that's actually the concept of quality of life, which is very difficult to understand, even as adults. So I can't even imagine, you know, as a child, you know, if you ask a child, you know, do you have a good quality of life? Are you okay? You know, probably I will tell you, yes, okay, I'm fine. It's very difficult to understand, you know, what we are talking about.
00:04:25
Speaker
That's actually when we had this idea of trying to take a look at these data. So again, we have all these database of studies conducted on ADHD medication, something that we are you know working on year-by year by year updating. So it is really, really comprehensive.
00:04:40
Speaker
And we have taken a look at those studies that actually measured quality of life before and after, um basically you know using medication for for some time, in comparison to Oplacivo. That's usually know what we usually do in clinical practice. And the outcome was really, okay, combining all these studies,
00:05:01
Speaker
Are there some medications that are usually used either with children or with adults with a diagnosis of ADHD?
Measuring Quality of Life Across Ages and Demographics
00:05:08
Speaker
Are some medications that are better than others in improving quality of life? And the main question actually is, does ADHD medication also improve quality of life besides, let's say, reducing ah you tension and hyperactivity, impulsivity?
00:05:25
Speaker
Yeah, absolutely. And that's the question. So um I think the first thing is probably to talk about what quality of life means. what do we When we in a research context or in a clinical context talk about quality of life, what do we actually mean by that? Yeah, I mean, as I said before, it's it's a really broad concept.
00:05:46
Speaker
But overall, if we think about the quality of life in an adult, it usually reflects how much satisfied someone is with their life on different domains. It could be, for example, from a health perspective, you know, do you feel healthy?
00:06:02
Speaker
and Do you feel that you have, let's say, a good job? You know, you can pay your bills every month. Also, you know, treat yourself, dinners, you know, some whatever you want to do, basically. Or even in the psychological sphere, you know, do you feel that you are supported by your family, your friends, or do you feel lonely, for example, that those are some discriminants of quality of life?
00:06:28
Speaker
So obviously there are different spheres and for others, it is really a concept that may differ because what quality of life means for me, you know, it could to be very different for you or for someone else or for a child, you know, right? I can't imagine you what what the best quality of life would be for a child, probably, I don't know.
00:06:47
Speaker
Playing all day, no rules, I don't know, candies all the time. It's very wishes I usually like. well i don't better Better school food and no rules. exactly we say so Yeah, very broad concept. And this means that since it's broad and it's something that is quite tricky to define, it's also difficult to measure. It's actually one of the challenges that we we have seen a bit of inconsistencies across studies in how they measure quality of life. And also the difference in between children, adolescents and a adults, because usually with a adults, you have the person, you know, reporting, self-reporting on their life satisfaction or quality of life in the different domains. But for children, it's it's much trickier.
00:07:34
Speaker
Usually, it's either the parent or the caregiver that estimate the quality of life based on what they see in the child. yeah We also have like kind of ah some child self-report measures, but that's actually what what what was surprising from the beginning to see and a lot of differences even across studies making it probably a bit more difficult to to measure this domain of quality of life, but yeah, I think it would be important to understand when you are in the clinic and you ask you know someone, okay, you try this medication, did it improve your life satisfaction? I think it's probably a better question than asking, okay, did you see like a reduction in inattention, hyperactivity, impulsivity? Because usually that's the focus, right? you know It's ADHD medication, so we assume that you know the primary target would be ADHD symptoms.
00:08:29
Speaker
But you know we can talk a bit about that later as well.
Medication and Quality of Life
00:08:33
Speaker
Yeah, I think and i think that's really true. We do need to talk later, but as a clinician, you you give people something or you would deliver some kind of intervention because it's going to make their life better. but you know you don't if you're If you're in kind of general practice you and you want to bring somebody's cholesterol down, it's because it will make them less likely to become unwell. um In the same way, you know we we can get too fixated on the kind of surface level of things as in
00:09:09
Speaker
the actual symptoms, but not actually the the kind of what we're actually aiming for, which is to make people better. yeah One of the things that i strikes me is that, and it is a distinction I know that you you draw in your paper, I know it's not neat, but there is this objective, how you feel about your life, how you would assess your life. And then there's the functional, how you manage the different things that you have to do in your life.
00:09:38
Speaker
um is that ah Is that a valid distinction to make when you're thinking about quality of life? Yeah, it is. and Previous studies actually have taken a look at both. so in ah In our metaanalys and sorry of systematic review and meta-analysis, we try to keep the focus only on quality of life and measures that actually mention quality of life. Because when you talk about functioning or you know adapting to the environment, this could mean really a lot of things and many things.
00:10:06
Speaker
it could be getting a job, keeping a job. yeah And we know though that those those are obviously important areas and we want to promote, you know we want everybody to be satisfied with their life and get a good job, function. But even if you're functioning in the environment, if you think about it, you could be like you know CEO of a company, maybe you are struggling so much with your mental health. So maybe you can be functioning in that environment, but yourself,
00:10:37
Speaker
appraisal, self-evaluation of, you know, the quality of your life could be very low. And this says the same for ADHD, at least in my opinion. So I'm a psychologist, so I often try to take out, you know, any medical aspects of ADHD if possible, because we know, for example, that medication does not work for some people with ADHD. Does it really mean that these people cannot benefit somehow, even if they're inattention and hyperactivity impulsivity it does not you know is not reduced. Could they still maybe benefit from medication in other areas? Oh, I see what you mean. Yes, even if it doesn't seem to make a difference yeah to the actual symptoms. What's in line with all the neurodiversity and neurodivergence paradigm that we you know that we hear about and and we discuss about, it's it's important to understand that you know at the end of the day ADHD is not a disease, right?
00:11:35
Speaker
is not something that automatically and cause problems. The setting is really, really fundamental and there are many children with ADHD or even adults with ADHD that maybe they keep you know experiencing the symptoms because these are not really symptoms at the end of the day. They may be just you know characteristics of the person. Maybe medication does not work, but it could be that you know maybe some combined intervention, You used to do maybe some and pharma or psychological oriented support. you know you give You give support to the person so that they can really function well in their environment, regardless of the symptoms, for example. That's something that we don't know much about. you know yeah That's something that we stated in our paper. But that was actually the rationale for taking a look at that. you know Besides the symptoms, do we see this improvement in quality of life?
Environmental and Personal Factors Affecting ADHD
00:12:31
Speaker
Absolutely. I mean, i think I think a lot, again, from a clinical perspective, my feeling is that a lot of the function of functional impairment, however you want to define that, we can go back to that in a second, is to is to do with a mismatch between the person and their environment. And the solution to that is perhaps to alter something about the person neurologically, but also to alter the environment. There's a two way street here. And and I think too too often we only talk about altering the person rather than altering the environment? Yes, I think that's that's ah that's ah that's a key point. And then if you want to adapt, obviously medication is not the first choice right for for children and and adolescents in the UK. If we take a look at the nice guidelines, and medication should come later if things do not improve when you somehow support the child and the parents as well.
00:13:25
Speaker
with some some more strategies. And and that's important. And the problem that we have is that whenever a person with ADHD becomes adult, you know let's say 18, 20 years old, so education, that is the first choice. yeah The UK, for example, but also in many other countries.
00:13:42
Speaker
But then besides medication, there is not much else. no And actually how I try to explain what we found in this systematic review and meta-analysis that you know I'm happy to discuss a bit more what we found actually. But we'll get there, that's our second question. That's good. But yeah, I think that's that's the importance of of understanding what we do and try to understand, okay,
00:14:08
Speaker
how can we reach that stage that you were talking about before, you know, yeah improving satisfaction with their life. We do want to get on to what you actually found. You're quite right to allude to the fact that we're still on the side to talking about the background. But I think the background is really important to know what it is that it actually the results mean. I do need to ask you to quickly exchange explain what a meta-analysis is and what a systematic review is to a non professional, non-technical audience, if you could try. Absolutely. I can try, I can try. So, you know, scientists, you know, and clinicians, when we do research, let's say on ADHD, we usually run, you know, specific studies where we recruit, let's say, you know, 100 people, 150 people, we collect some data, analyze the data and then publish the results. And that's one study, what I call, you know, one primary study, you one original study.
00:15:05
Speaker
But when more and more studies actually are published, you can't really as a clinician or as a policymaker or even ah as a member of the public, you can rely on results from one study only because you you never know you know where the sample of participants was taken, what measures were used. So we have a discipline in psychology, psychiatry, healthcare, care which is called evidence synthesis.
00:15:29
Speaker
So this discipline actually allows us to combine all different original studies together. So basically go out, take a look at online databases where we have all these papers stored, all the results of the studies stored, and then systematically actually look for the papers that are relevant to address our research question. In our case, you know,
00:15:52
Speaker
Is ADHD medication beneficial, helpful for improving quality of life? What we did was a systematic review. So we summarized, we collated first of all, all the existing literature, all the existing articles on that specific topic. Obviously there is a process to do so. Usually you screen, basically you you read a lot of titles and abstract of many, many papers, and then you determine which one are actually helpful for for addressing your research question. So at the end of the day, you do not have only, let's say, the original 150 participants, but if you include, let's say, you and you find 10 or 15 studies, maybe you have thousands of participants that you can combine all together and then you analyze
00:16:39
Speaker
the findings from different studies altogether.
Geographical Diversity in ADHD Studies
00:16:42
Speaker
that's As if it was one big study. Exactly. It's basically combining different studies together. And the meta-analysis is the statistical analysis that we do. Basically, we take the results of each study, but obviously, one study is on 10 people. It will have ah a much lesser weight than a study, let's say, on 1,000 people. Yeah. so yeah have like statistical methods through which we can weight each study based on the sample size, the number of participants, and also the effect. In this case, the effect was you know the benefits of medication for improving quality of life compared to placebo, which is basically sugar pill or no medication at the end of the day, which we use in clinical trials.
00:17:25
Speaker
And that's the methodology. So it really allows to have a bigger picture of the question that you're asking. So yeah not not focus only on one sample, one group of participants, but on different studies, hopefully conducted in different parts of the world, even though with clinical trials, we know that these are mostly from UK, USA, or Europe. But ideally, if there were any studies, let's say from South Africa or Australia, they were included as well.
00:17:55
Speaker
Then you combine them together and do the analysis on a much bigger sample. Here we have about 5,000-ish people that we could basically you know get the data from. and and One thing before we go on to finally what the result was, but it is remarkable the explosion of data and in ADHD, the the number of studies that are coming out is just exponentially increasing in a way that's extremely difficult to keep up with. and Having a meta-analysis really is helpful to pull all of that data together similar um yeah from all the myriad studies. but I don't know if you've noticed in the literature, the geographical um like diversity of where studies are coming from. There's a lot of stuff coming from China now, a lot of stuff coming from Iran, which is very unexpected.
00:18:45
Speaker
So I think, you know, when we do that, you know, when the next one happens, there'll be quite a diverse population involved in them. Anyway, that's just a... Yeah, that's a good point. I think it's a positive aspect and I worked previously also with people in Saudi Arabia that, you know... Oh, right. Yeah, yeah, yeah. ... for example, that they were running... There are plenty of... ... some studies there, Middle East for sure, developed clinics. That's a really... I worked also in Malaysia two years and... There is, it's a bit behind, you know, there is, ADHD is still not really clear what they mean. And, but it will be, it will come, it will come there. And obviously there is more awareness. So more and more people read online and learn about ADHD and hopefully by, you know.
00:19:25
Speaker
What's doing this podcast? Well, exactly. Everyone listens to the ADHD Science podcast. Although I've seen the viewer figures. Not everyone listens to the ADHD Science podcast, but a number of people do, which is great. But not everyone, not yet. So let's find out. So unless you yeah unveil your results, don't ADHD medications improve your body or not.
00:19:52
Speaker
So yeah, with this technique in the systematic review, we got about 17 studies that were relevant, which is really a very low number. And that's actually the first message that that we had and that we had included in the paper. Probably we need two more studies to also include other metrics that are not just ADHD symptoms.
00:20:13
Speaker
that sometimes people with ADHD, maybe they are not really interested to see if their level of inattention or hyperactivity and positivity is reduced. But the knowing is it beneficial? Is it good for them? Is it helpful? this yeah And helpful means quality of life. And there's so many other things that we can maybe talk about in in the future. But anyway, we found these studies, about 5,000 people. and There were three main medications that actually the studies were focused on.
00:20:43
Speaker
which were stimulant metaphenidate and amphetamines and then non-stimulant atomoxidin. There was a mix of these three. So the good news is that we found that the three of these um so both stimulant and non-stimulant medications that were analyzed actually they were more helpful to improve quality of life compared to placebo in people with ADHD. And this included both children, adolescents, young adults, and adults actually. We didn't find any age effect. Actually, we didn't also find many studies to
00:21:18
Speaker
compare between children and adolescents and adults. So what you're saying is that the effect that exists, exists across the ages? Yes, that's what we found. We didn't find any, but we didn't find many studies, unfortunately, because of what we were talking about. Yeah, you might have enough data to see an age effect that is there. Exactly. I mean, probably it would be important to run more rigorous studies looking specifically for me, not only if medication or other management support strategies help improve quality of life, but actually what lead to improvements in quality of life and what people with ADHD think is going to improve their quality of life. Yes, exactly. So patient. Yeah.
00:21:58
Speaker
patient outcome measures, patient recorded outcome measures. Yeah, absolutely. Because what's important again for one person could be also not really that important for another. Yeah, I mean, I was thinking that we were talking before, but we got into too many different tangents. You know, a lot of the functional stuff is quite societally determined. You know, you are perfectly happy, but you haven't got a job.
00:22:20
Speaker
You haven't got particularly high income and you're not, you know, you just, you just live in your life. You're just
Impact of ADHD Medications Beyond Symptoms
00:22:25
Speaker
getting on with it. And yeah we can't, we we must kind of value that anyway. thatmorph yeah like But I think it's an important one. um So how big is this effect?
00:22:37
Speaker
Yeah, that's an interesting point. Let me open up also the paper because obviously I don't remember all the numbers. I've got to open it as well. The largest effect was for amphetamines. I mean, as you probably know, and maybe as the audience knows, you use amphetamines primarily with adults, actually. And methylphenate, that is usually kind of ah the first choice medication for children.
00:23:01
Speaker
Atomoxetin is a non-stimulant, so usually you try non-stimulants after. So basically, if stimulants actually do not work, they lead to too many side effects, which actually are really unpleasant and lower probably quality of life, then you can try maybe non-stimulants before trying other options or maybe do some non-pharma intervention. But the effects were um basically We have different cat categories in medicine, but also psychology to define effect. They were actually small to medium. Well, usually if you take a look at the effects of medication on ADHD symptoms, usually these are large in clinical trials. So the conclusion is that for quality of life, medication alone at least is helpful, but could not be sufficient. At least that's what's my theory. That's our theory actually could not be sufficient to actually
00:24:00
Speaker
It's a much broader domain and and concept. I mean, to be honest, we always have to remember that based on the evidence that we have the best intervention, the best support that we can give to a person with ADHD is a mix of medication, but also known pharmacological support, like psychological support and social support, occupational support, which is because we cannot expect medication to be like a magic pill.
00:24:29
Speaker
or a magic potion. And that's a really important, albeit that it is a positive result because it does have an increased improvement does show an improvement in quality of life. It it also is much smaller than the improvement the improvement in symptoms. And therefore, we have to think very carefully about how we yeah how we improve the the the the environmental fit in order to improve the quality of life further, yes. Absolutely. because i mean we We know how medication acts, or at least we have theories. But if we want to take a look and talk, basically, medication just acts on the brain, basically. you know It just improves the efficiency of somebody.
00:25:13
Speaker
um brain networks that we think are implicated in, especially inattention. So even like the reduction in hyperactivity and impulsivity, there are some theories that say that via the reduction in inattention, you automatically have then a reduction in hyperactivity and impulsivity. But that's not just enough, right? Because like, if you think about getting a job, it's much more than being able to concentrate and and be there and we also have many people with ADHD that struggle to get some jobs because of many reasons also some societal barriers um so it's it's really a journey I would say. Yeah and and very often I was talking to someone today about you know emotional regulation being actually one of the main barriers is the ability to
00:26:02
Speaker
regulate and and control your emotions, particularly for children. And actually, that's not really, that's not really, I mean, I'm not saying that this is worthless, because you're not talking about emotional regulation. But you know, this is another dimension that really probably ties very closely to quality of life that isn't necessarily captured by conventional yeah um studies into, you know, which are kind of just both. Yeah, i'm I'm glad you mentioned this. I don't think I mentioned that emotional regulation is actually my first field of interest. Okay. not we But in child and adolescent mental health as a whole, because I moved into this area for the reason that you mentioned, we, there are some theories that we are, I'm trying personally, you know, to maybe gather some funding to explore this area. But there are some theories that actually state that
00:26:53
Speaker
difficulties and actually it's not only difficulties, but also when you cannot really acquire the relevant age appropriate skills to regulate your emotions, you might struggle basically to adaptively regulate emotions in different settings. And this could be actually what is perceived clinically as emotion dysregulation. okay For example, a child in primary school that, let's say, behave like a child that is usually maybe in kindergarten or in nursery, emotionally speaking. Conchromes, becoming super angry. Emotional regulation is is is a skill that we develop. We start developing basically when we are born and we continue. There are different factors. We don't know yet what factors actually lead to basically becoming mature as an adult, but we also know that many adults
00:27:50
Speaker
actually don't have the same skills in relation to. So um there is a lot obviously of variability, a lot of cross-cultural differences because how emotions are portrayed. Let's say in the West or in more individualistic cultures, it's very different compared, let's say to Asia, where and the the culture is more collectivistic. and And you see really by working with people from different countries and so on.
00:28:20
Speaker
But to go back to to why I'm interested in this, 60% of children who are referred to mental health services in the UK, for whatever reason, could be ADHD, could be other depression, and anxiety, they actually show difficulties in both emotion regulation, but also what is called arousal regulation. So they actually struggle to regulate the physiological activation of the body,
00:28:48
Speaker
especially during periods of stress. And we think that this could be one of the early contributors to the onset and the maintenance of mental health challenges. not only in ADHD, but across different conditions. um We have theories on that. We have a lot of research being conducted and probably a lot of research too to be conducted. Just to give you a bit of a disclaimer, we can record another podcast.
00:29:14
Speaker
yeah but we are actually doing ah We actually have done the same study as this systematic review, but instead of looking at quality of life as an outcome, We took a look at ah basically the effects of not only medication, but also non-pharmacological options for ADHD on emotion dysregulation. Yeah, we need to do that. We need to do that as well. We're actually writing papers right now.
Tailoring ADHD Treatment to Individuals
00:29:40
Speaker
The other one published. It is unpublished, yeah, but ah we are writing the paper at the moment and hopefully it will.
00:29:46
Speaker
So when it comes out, we'll do the, well, I need to look at it. I need to look at, I need to answer this question from this patient today. Yeah, no, fine. I will wait for it to be published. Exciting stuff. Excellent. We've booked you in for for a repeat already. But so just to give you a bit of a top, you know, medication does not automatically improve emotion desecration as well. I think that's the problem. Much more complex. Yeah. I think, I think that that's the difficulty that you have. Anyway, we have got, it's a slight tangent. Let's go back on to quality of life.
00:30:16
Speaker
One of the things that is difficult when you have an, what you're alluding to is an effect size, you know, as in how strong the effect tends to be on average for the drug versus placebo. People often, people sometimes say, well, what does that mean? What is, if I take this medication, what is the percentage chance that it's going to help my child to improve their quality of life? And I always find that very, very difficult to actually answer that question, what are the chances of an improvement? Because what we have is an average amount of improvement, in a sense. Yeah, absolutely. Again, I think that's the problem. It's not the problem, but its it's a limitation of more traditional research that is usually conducted on groups. And we take a group of people and then we average that. but And obviously, you know you have the average, which is basically the in-between score, but then you have
00:31:12
Speaker
ideally half of people that will score much less than that value and half of people that will score um much more than that value and that's actually what we found as well a lot of heterogeneity in the distribution of improvements in quality of life associated with medication. In some studies actually the effects were large meaning that medication was absolutely superior than placebo but there were also studies and probably within those studies I assume that there was also this variability and something that probably you see in clinics every day. Medication is not something that you, you give medication and then you have the same improvements. But that's the next step. So this is, these are some, all these works, systematic reviews, metanalyses that we are doing are to establish some areas. But then the next step is really to work towards identifying first again, what measures matter for people with ADHD.
00:32:06
Speaker
So what are the outcomes that actually they would like to see changed with medication or with a combined intervention? And then we need to understand something that we can't do now in clinics. We need to really understand what is the best intervention for that specific person. Let's say based on a profile that they show, because that's the next thing. So individualized um support, you know, within precision medicine,
00:32:36
Speaker
must be the future in relation to ADHD. Yeah. I mean, it's one of the things that is frustrating is that when you are starting medication, it is so much trial and error and so much time is taken up with going, okay, so that didn't work. Sorry. Let's see if this will work. And we just don't know. And it it is enormously frustrating in such variability. yeah We are we trying, you know, Southampton with my colleagues, you know, I'm working with Professor Cortese and also Dr. Parlatini, and we have many, many colleagues also in the UK, but also across the world in Europe. We are trying to do some studies to actually see, first of all, I think the first thing to do is really, okay, let's take some measure at baseline, basically, and then see
00:33:19
Speaker
how people respond, and let's see if we can at least group different people together based on their response to the same intervention, and then let's see if they have something in common at baseline. That's the easiest thing to do. Yeah, yeah, yeah, yeah. To listen to prediction, or if you do that, maybe we can try to find. But we are at that stage that we don't yet know, and we are in 2024. And we all we always sort of hope that genetics will answer that. at least I mean, genetics is not going to help us necessarily, not necessarily anytime soon, But we hope that it will help us in predicting drug response. But again, nothing's come through and it's been a long time looking at this. yeah And it's not really easy to collect in clinics, right? I mean, you can't for each patient do like on genomic analysis. This is very expensive. So what we are trying to do is really try to understand and use other metrics, other measures that we can maybe easily collect in clinics
00:34:14
Speaker
Um, so we are working on this and, you know, hopefully in a few years yeah with some support from funders and working obviously with, with people with, with a diagnosis of ADHD, that's fundamental as well. Hopefully we will be able to maybe answer this, this question or at least start understanding a bit more. Okay. Um, so.
00:34:35
Speaker
I'm obviously delighted as somebody who prescribes and, you know, discusses ADHD medication on a regular basis. I'm delighted that there is an effect, but I suppose I need to be my podcaster self.
00:34:49
Speaker
and try to kind of throw a little bit of cold water on this and challenge the idea that it is. And there's two things that I suppose I want to sort of, I mean, this is not, you know, I'm not trying to try to destroy the paper. yeah But there's a couple of things I thought were interesting questions. One is what's the duration of the studies that you're looking at? Because if you can display a short term improvement in quality of life, that's quite different to a long term improvement, isn't it? Yeah.
00:35:16
Speaker
Yeah, there was obviously heterogeneity also in that across studies. I think we had some studies that were very short, like four to six weeks. I think the maximum that we had was 24 weeks, because if you think about clinical trials there, usually that is like probably six months, maybe some goes up to a year or a year and a half. But most of these were actually between probably four and 24 weeks, if I'm not mistaken. So really, really heterogeneous. And I agree, probably, you could see some, some effects, some changes in quality of life from the long term, you can't expect really, maybe in in a month to really, you know, completely change. It is tricky. reflection It is, yeah. Because a lot of my experience of ADHD, treating kids with ADHD is that some of the, some of the improvements to quality of life do take that long, you need to have that period of
00:36:14
Speaker
You know, your symptoms get a bit better, you feel a bit more positive in school or in your job, you get more positive feedback and therefore you feel more positive about yourself and you achieve more. That takes months. So actually, if you're only doing it for four, or six weeks, you probably went you might not see a quality of life improvement in the course of um that period. Conversely, I think it's really worth worth making the point. it's not We are obviously interested in long term quality of life improvements.
00:36:42
Speaker
yeah But it's I think it's really important to make the point that it's almost impossible to run a randomized controlled trial for two years um but i mean on medication against placebo when people might want the medication.
00:36:54
Speaker
um so absolutely so the
00:37:00
Speaker
You can always flip the paradigm. I think we can always change. I agree that obviously randomized controlled trials, they are the gold standard in medicine. If understanding something works at the group level, we know that they are the gold standard. But if we slightly change how we do research on this, we could aim to collect data in different ways. That does not require, for example, the person to come to the clinic. We now have a lot of nice technologies.
00:37:28
Speaker
that we can use for that. Also try to maybe find and see if there are some objective changes in some objective measures basically that we can collect in different ways that could help. you know also too And that's the first thing because that's just another way of doing research, but the research that matters at the end of the day. We already know that this medication works for ADHD.
00:37:54
Speaker
We don't need to do
Clinician's Role and Personalized Treatment
00:37:55
Speaker
more research for that, but do a different kind of research again to do more individualized interventions and support and also a bit of prediction, as you said, you know, instead of telling you, ok okay, let's try this, maybe let's go in this direction because based on your profile, we think this is the best we think, but i obviously then you have always to try. And then also I think that involving people again with lived experience with ADHD is crucial to understand, okay, what are the areas that you want, you know, to see a change in. Because again, medication probably will not be sufficient to produce changes in those areas. If we talk about emotional regulation, life satisfaction, interaction with your kids, with your, you know, partner and so on and so on.
00:38:42
Speaker
Yeah, and then you get into more of an individualized approach, which is really great and kind of in an individual level and clinically is the way forward, but it makes it more difficult to produce these kind of neat research evidence. Yeah. You know, what works and what doesn't because it's because it's because it's so individual, individualized. But that's a that's an eternal problem of pharmacological versus non-pharmacological intervention, I suppose. absolutely Absolutely. And research as well, because I mean, we know again, clinical trials, the article standard, but the inclusion criteria to get into a trial usually are very restrictive. And we know that in the clinics, we rarely see the profile profiles of people that we see in clinical trials, you know, you have
00:39:32
Speaker
You know, better than me, you have this very mixed profile, a lot of appearances. And the ADHD is only one thing that's going on. only one And sometimes maybe adding like other conditions is an exclusion criteria for clinical trials, because obviously you don't want confounding effects. so I'm not saying again that RCTs are not what we want because they are needed and they are the gold standard, but we also need to acknowledge, as you said correctly, the limitations of these four people that are actually experiencing challenges.
00:40:05
Speaker
and Absolutely. um And the other thing I suppose is just just what people might be thinking, well, okay, when these studies, and I know they're quite variable, how they run things. How do you deal with the fact that people who don't like the medication who might get side effects will then drop out, stop the medication, therefore be lost to the study? How do you deal with the fact that those people for whom the ADHD medication is probably worsening their quality of life, but then they stop it and therefore they're back where they started? how do you How do you make sure they don't... Yeah.
00:40:42
Speaker
In this systematic review, obviously you can't tell because you can't rely on data from people who dropped out of the studies. But I agree. There are some continuation trials that could work, for example, you know, when we just discontinue one medication, and then you see the effects. ah But I think that that's another probably, we could do another podcast about that, about how we present medication, and how we present the potential effects of medication. That's how we discuss it clinically. Yeah, how you discuss with patients as well, because I feel that's an important area. Because obviously, if you're told, okay, this is going to work for sure, because it's the best option, but then it doesn't work.
00:41:29
Speaker
you know, how much would you last? Exactly. we Six weeks max. But then if you have to wait, let's say six months to see the effects, I mean, even engagement of of of the person that is taking the medication is crucial. So that's why it's important to work more about how we monitor also. Yeah. Patient, how we talk to patients, to people with a diagnosis. Yeah, it's a very good point, actually, because sometimes, unfortunately, particularly with stimulants,
00:41:57
Speaker
the side effects happen quite early and the the beneficial effects and quality of your life take a look take a while. So it really is, it really can be a bit of a baton simmer fire to to get get going with these things. Yeah, that's another area that we're trying to to do something and hopefully again maybe with with some with some new ways of presenting medication or maybe showing the effects of medication on a short term, on specific metrics or on specific measures that could really maybe help to keep the person engaged. So even if you know you are experiencing side effects, maybe we can try and lower those, but you know you see already that you are improving on other areas that could be related and on the long term.
00:42:45
Speaker
could predict. But obviously, we should also acknowledge, on and that's something that we must acknowledge, that it's extremely difficult to do within our NHS services, which are all stretched where the within research belongs. I mean, we can't rely only on psychiatrists for for this. And as a psychologist, I mean, we we really have to do something to also present and and propose non-medical approaches to management of ADHD. That's crucial. Yeah, I think there is a bit of a divide, isn't there, between, you know, this is ah this is the stuff that we do and that's the stuff that you do and it's not particularly helpful. It should be, right, combined and and, you know, like a kind of multidisciplinary team working together and in the real, sorry, imaginary world, it should be like that.
00:43:37
Speaker
But and to be fair, there's probably and most teams have got multi discipline, you know, many many disciplines within them, and which is that each patient will be seen by one of them. yeah And that's, that's where it gets, it gets more tricky. So I think that's kind of brings me to my third, third question, which is what, what are the, what are the implications of your work for a clinician or someone who's looking after people with ADHD?
00:44:07
Speaker
Just to draw together some of the things we've been talking about. Yeah, so we we have actually you know we yeah actually acknowledged in the discussion of of this systematic review of this paper that I think something that someone who is interested in quality of life should do is probably, we should try to work together on on a kind of a consensus on what measures of quality of life are actually more valid.
00:44:35
Speaker
you know know, general, that we can maybe apply the same measure and adapt it, let's say to the age group, for example, um try to find some kind of a child friendly let's say, I don't know, games or activities where we can really understand what medication is doing and not only rely on what parents and teachers see, because obviously, we're always talking to a person and that person will become an adult, adult but they have like, you know, conscience, they they think, they perceive, they experience, and if they are the ones with ADHD, they should be included somehow in this.
00:45:14
Speaker
and And obviously it's not only the challenging behaviors because obviously you have a lot of hidden ADHD related behaviors or also thought patterns that we know are really important and are really relevant, especially for mental health. We know how many actually young adults, for example, maybe they get their ADHD symptoms, let's say, treated. on quoation mark I don't like this work, but maybe medication help them during their childhood or adolescence
00:45:45
Speaker
to see, you know, to become more attentive at school, better at school. But if you only relied on medication, maybe you did not address, let's say low self-esteem, or maybe difficulties in getting um getting
Societal Change and Inclusivity for ADHD
00:45:59
Speaker
more friends. or that that's Those are important things that we don't maybe see as parents or a clinician, because obviously, you know, you don't see aggression, you don't see hyperactivity. Great, medication is working.
00:46:12
Speaker
Okay. and You still have many friends and you're still not very happy. Yeah. Let's also ask about that. So that's something to do, you know, consensus on, okay, on what measure we can use. And also try to consider that in clinic, obviously. I know that each clinician has its own way to understand how medication works and the kind of question that you ask to the family or to the child, to the adult with ADHD. And when you ask them,
00:46:43
Speaker
Okay. We try this medication. Is it working for you? Okay. But what, what are you implying? Because indirectly, you're implying something, right? and For a child, it is actually, are you you know getting better at school, more attentive, you know more present in the class, less hyperactive? Good. But quality of life should probably be also another. And then obviously, for researchers and also clinicians interested in this, which could also be psychiatrists, to be honest. It doesn't have to be a psychologist only interested on non-pharma intervention.
00:47:15
Speaker
Let's really focus on this and try to see also this kind of project that I'm currently in doing actually to do the same in relation to non-pharmacological interventions for ADHD. So there's part of that for a minute because that's our fifth question. But what's the the fourth question is, so what does this mean? What is your, if I am a person with ADHD? So let's say as a person with ADHD, what does your research mean for me?
00:47:44
Speaker
Okay. so That's a very good point. um I think the main message is that medication is helpful. So this could be really a message that, okay, we know that medication does not work for everybody, especially on the short term. There may be side effects, but if we take results at the group level, medication is actually helpful for improving quality of life.
00:48:08
Speaker
especially on the long term. So that could be something that if we maybe tell people with ADHD, we could have more adherence from some some of them that may be you know more reluctant to not use medication.
00:48:23
Speaker
um So instead of only presenting and only saying, okay, ADHD medication works for reducing inattention and hyperactivity and positivity, we now have evidence that, for example, it reduces injuries, accidents. um And in this case, it improves quality of life. And again, spoiler alert, it also improves emotional regulation. Okay. No spoilers. But yes, okay, it does. Good. That's nice. absolutely It helps on different domains. Then it is not sufficient per se. So it requires, it's not the person that has to change, but obviously there should, we should also tell, I think, and be very honest with, with people with ADHD, that medication, as I said before,
00:49:07
Speaker
is not a magic pill, is not a magic potion. There should always be some support that comes from other sources, some commitment also from people with ADHD to accept also these non-pharmacological interventions. So medication is not everything. Yeah, excellent. Thank you. Yeah. um And so finally,
00:49:30
Speaker
You've already, you've kind of alluded to a couple of things you're doing, but let's just spell that out. What are you, what are you looking at next? What's your next kind of question? what What are we getting you on next to talk about? So in relation to this specific work, as I was mentioning before, I'm trying to do the same study, the same systematic review, but on non-pharmacological interventions. for What sort of things, what sort of things do you mean by, because you've used the term quite a lot. So let's wait yeah Let's just be specific about what you mean and what you're studying. It's basically anything that does not involve taking a medication. That could be, let's say, in children and adolescents, we know what is the first line i mean of intervention and support, which is psycho-education and parent training. You work with with the parents, you know you try to um support them as you can. With the child, sometimes you also do some talking.
00:50:22
Speaker
therapies, especially when they are adolescents, especially in relation to mental health, but also how they perceive their ADHD experience and characteristics and and accept that. Because as as we said before, ADHD is not a disease. It's a set of c traits. It's a set of characteristics that the person has.
00:50:41
Speaker
and It's important also to accept these characteristics, especially if let's say medication does not change them or medication is just really uncomfortable because it makes you asleep or too much anxious. So what you have to do, you know you are there with your ADHD features and characteristics. And that's important also to accept and and bring that into your identity, your personality. It's it's really, really fundamental. you know We made a mistake 20 years ago with with autistic people.
00:51:12
Speaker
trying, you know, this intervention that we're actually trying to change their identities to be more neurotypical. We now know what is the mental toll that those kind of intervention. Absolutely. Yeah. It was super, super high. So we don't want to do the same with ADHD. So that's what we do. Obviously with adults as well, you know, it's it's important to say medication is not enough. Social support is important. And then we have to tell the society as well that we have to do something.
00:51:40
Speaker
very, very easy stuff. It's not only accepting and saying, oh, today is the ADHD day. Let's color our webpage of whatever color we want. It's really changing how we talk. And we know how also common ADHD is amongst children, adults, and some others. So I think that anybody in the audience, probably they know someone with ADHD, someone who may struggle, maybe they They don't know that they have ADHD, but, you know, they they may have some, some features. Um, and it's important as employers as well, you know, it's important to be inclusive, accommodate. And I think that that's probably where we want to go towards. How can we do that? That's the question. And that's so interesting because we started off, you know, as, as, you know, this is a meta analysis of, of medication and quality of life. But actually we've ended up effectively with a call for social change and acceptance and inclusivity, essentially. Yeah, I think it's um they are all different pieces of the puzzle. It's important to understand more about ADHD, to not medicalise it because it's not a disease, um and then to work towards understanding a bit more and understand and listen to people with ADHD.
00:53:05
Speaker
to understand what can we do to support you. Not only function, because again, even function is a word that I don't like, but you can live a good life. That's the aim, right? It's one of the United Nations goals, right? Everybody has to live a healthy and good life. I think that's my message. What a great message
Episode Wrap-up and Future Plans
00:53:28
Speaker
to end on. Thank you so much, Alessio. You've already committed to coming back. I will hold you to that.
00:53:35
Speaker
a And we hopefully see you when, well, when you've got some more stuff, I'll keep an eye out on the Google alerts and see when your next stuff comes out and I'll be ah pestering you again to come back on. But thank you so much for joining me today. And I'm sorry that Tess wasn't here, um but she's, you know, working for a living. um But maybe next time she'll be around. So thank you very much. Thank you for the invitation and thanks to all the listeners. All right.
00:54:02
Speaker
um Is there, what's the best way? I don't suppose you do social media or anything. none No one seems to do it anymore. Yeah, we do. I do actually. So I have ah an X account ah that we use actually to disseminate research findings in LinkedIn. We'll pop that in the show in the show notes once I've looked it up.
00:54:24
Speaker
Yeah, jawi I will. love yeah mean and Feel free. You can can check also my university page if you want. I mean, there are links to the papers. So if people want to follow you and and and and and keep an eye on your work, they they can venture. X is the best probably. I know, sad to say. Right. Thank you so much. ah Thank you very much to you. Bye. Bye.
00:54:46
Speaker
Okay, so that was Alessio. We may well crop up again, actually, we're probably going to think about doing some work. Hopefully I'll be there that time. And yeah, they're looking for some all sorts of things, very and energetic departments. So they're always on, you know, producing new work. And there may be some work alongside ADHD UK, which of course,
00:55:06
Speaker
kind of sponsors the show. Well, it is the show, right? Kind of is the show. Yeah, ADHD UK is the charity that supports us. It's the ADHD UK podcast, science podcast. Yeah, it is. So thank you for a whole year of support to ADHD UK. Or even a little bit of support if you just came. If you just popped up now. No, I mean, I'm thanking the charity. I thought you were thanking the listener. Well, thank you, listener. Well, thank you, listener. For a full year of the ADHD science podcast that we've done. Nice. High five. High five.
00:55:36
Speaker
I don't know how that's going to turn up in our brand new microphone that I bought because I broke her old one. How'd you break it? Just a little socket thing, it just broke. Oh. Oh gosh, I remember that. Yeah. That wasn't good. It wasn't good. But anyway, this is nice. Merry Christmas to all of our listeners. Happy Hanukkah. Happy Hanukkah, which is the same day as Christmas, I think. Yes, that's what my Google calendar says. And if you don't celebrate either of those, happy holidays.
00:56:01
Speaker
Yes, and we will see you in the new year. We're not sure when. Well, you'll see them in the new year. We don't know if I'll be there. Oh, I suppose we could do ah an initial plug. Sometimes in February, we're going to the Norwich Science Festival. Yes, sir! Yeah, and we're going to talk there, and we're going to do a live show. So that'll be good. Yeah. So if you're in Norwich, in East Anglia... Yeah. Then come along to the Norwich Science Festival. Come say hi. Come say hi. Next time we do an episode, I will give you more details. I haven't got them to hand.
00:56:29
Speaker
okay that's it that's it i think i think we can wrap up all right merry christmas everyone and good night okay you kept me you kept me waiting so long all right good night bye bye bye