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- [00:00]
Talkspace Host
This podcast is sponsored by Talkspace.
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Talkspace User
Last year I went through many different life changes. I needed to take a pause and examine how I was feeling in the inside to better show up for the ones who need me to be my best version of myself.
- [00:15]
Talkspace Host
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- [00:41]
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- [01:05]
William Curb
Welcome to Hacking youg adhd. I'm your host William Curb and I have adhd. On this podcast, I dig into the tools, tactics and best practices to help you work with your ADHD brain. Today I'm joined by Sky Waterson for our Research Recap series. In this series, we take a look at a single research paper, dive into what the paper says, how it was conducted, and try and find any practical takeaways. In this episode, we're going to be discussing a paper called Adherence, Persistence and Medication Discontinuation in Patients with Attention Deficit Hyperactivity Disorder. A Systematic Literature Review. This study asks what's going on in the real world with medication adherence. Are people taking their medicines, and if not, why? I found this paper because it was presented by Bill Dobson at the 2025 ADHD conference in Kansas City this year. And I was just blown away with his presentation on it. So I really wanted to kind of dig into this paper and find out a little bit more about what's going on here. So with that, let's get into it.
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Sky Waterson
Yeah, this was such an interesting paper. I'm so glad that they brought it up at the conference because when you told me the outcome, what they found in this paper, it, it literally blew my mind.
- [02:15]
William Curb
What they found was that a majority of people don't adhere to their treatment regimes. They like once within the year period, what Was the number?
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Sky Waterson
One to three years?
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William Curb
Yeah, one to three years. And only 25% of people stayed on medication.
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Sky Waterson
Yeah, it was really low and that was kind of what they were looking at, was why people are not staying on medication and to. To kind of not bury the lead even more if you get to the end of this paper. This paper is largely supported by people who get funding from medication. So this is not a conversation about anything other than how do we not make this happen.
- [03:01]
William Curb
Yeah, like, they're very interested in being like, well, if people are getting benefits out of this, because. And we'll get into that, but if they're getting benefits, how do we make sure that they're still getting them? And if they're not getting benefits, maybe we need to change things. So, yeah, while all the authors are connected with the. Or not all, most of the authors are connected with the Sinclair Group, which produces ADHD medication. They. This isn't really a question of. Yeah, I didn't really mind that. I was like, oh, yeah, that makes sense why they're looking into this.
- [03:33]
Sky Waterson
Yeah. And it is a problem. I mean, just to give you those numbers exactly. In the introduction space, they said, you know, when over half of all patients failed to adhere to treatment guidelines or discontinue treatment within two to three years of starting this treatment, which is such a. Such an intense thing. And, I mean, they do compare it to other treatments, and we can talk about that as well, but it's not something I'd ever heard before. Before you brought this paper to us.
- [04:05]
William Curb
This paper was the meta analysis, looking at a lot of papers published between 1990 and 2013. When this paper came out, they were looking for papers that talked about, hey, what are people staying on their medication, both in children and adults. We mostly are looking at studies on children, although we did find a good number on adults, which is great.
- [04:28]
Sky Waterson
Yeah. Because the different. The reasons are slightly different. But, yeah, they started with 1,300 papers, and they ended up with 127 once they excluded, you know, not relevant duplicates, et cetera. And most of those papers were in adherence in children, which makes sense. A lot of papers with ADHD are in children because it's easier to. To do those kinds of studies.
- [04:53]
William Curb
I think the adherence in adults is an especially important conversation, especially for, you know, the listeners of this podcast. And also in regards to the presentation I was at from Bill Dobson, where he was talking about a lot of the times when you have an adult coming in, especially at this time period, it was not because of their own volition that they were coming in. It's someone else in their family going, there is a problem. You need to go get treatment. And oftentimes having, having that external pressure is not going to be enough because you need to want to do this on your own. Because. Yeah, we can get into some of the reasons that people go off ADHD medication here, because that's a big part of the study. But if you don't want to do it yourself, I mean, problems kind of go away on their own if people are like, well, that's just how things are.
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Sky Waterson
Yeah.
- [05:50]
William Curb
So if it's a spouse, if it's work, you know, this is a area where you do want to have your own volition and you want to be the one kind of writing this. And so that's one of the big factors in why people are not staying is because they. They don't want to be.
- [06:08]
Sky Waterson
Yeah, exactly. They don't want to be. And the, the side effects as well. So one of the most common reasons that people discontinued, so it was 30 out of the 41 studies, was that they considered adverse effects, you know, and adverse effects was, you know, in 30 out of the 41 studies, and then ineffective symptom control. They didn't feel like the response was enough, was 27 out of the 41 studies. So largely those were the two reasons that were given. We don't know, you know, what that means. They didn't tell us what some of those adverse effects were, which was a bit unfortunate, but that's what they, that's what they found.
- [06:48]
William Curb
Yeah. And I think a big piece of that is there are a lot of reasons that people. There are a lot of side effects that people can have with medications. And because we're looking at both stimulant and non stimulants in this. So we have like the, like amphetamines and methylphenidate medications, and then you have things like guanfacine and all these other non stimulant ones that. So you have a lot of things that can cause different side effects. So while we are trying to reduce the number of side effects with proper medication, a lot of times people, when they're first starting, they're not on the proper dosage and so they're going to be feeling these side effects. So that's why looking at this in the first year is kind of important. Like, hey, are these. Are people getting the correct dosing right off the bat? And oftentimes they're not.
- [07:38]
Sky Waterson
And that's where it kind of gets a little bit more complicated because they talked about this idea of titration, which is a really common. It's something I think you never hear about until you go on medication and then it becomes a really big part of your life, you know, and also switching medications, you know, switching from a stimulant to a non stimulant or vice versa, like what that process looks like and what that means in terms of continued adherence over the period of time that we're discussing.
- [08:06]
William Curb
I think a good place to come back with is like the drug holiday idea.
- [08:10]
Sky Waterson
Yeah.
- [08:10]
William Curb
So one of the places that was really interesting to talk about. Some of the limitations in the study also are like the how medication, what it actually means to be off your treatment plan. And so one of the things that they had a little bit of trouble with and they talked about in the paper is this idea of drug holidays that some physicians tell their patients to do. It is not actually recommended by any ADHD organization, but it's something people are like, hey, if you're planning, having a planned break, maybe stop taking your medication for a while. I don't know why you would do that. This is like, unless you have really bad side effects, in which case you should be taking a different medication. Yeah, you should be taking your medication very regularly because ADHD affects you in all aspects of your life and, and should not be focused only on productivity like there are. If I'm at home and I want to enjoy my hobbies, it is better if I am taking my medication and I can focus on like playing a game or watching a movie and not getting distracted while I'm doing it or being able to clean my house. And so medication vacations are not.
- [09:26]
Sky Waterson
It, it speaks to a, an interesting relationship that certain medical professionals have with ADHD medication. I think that's the most interesting thing about the medication vacation discussion is that this is supposed to be medication that you're taking to support you with your adhd. In order to get diagnosed with adhd, you have to have this struggle across all parts of your life and it has to be negatively affecting you across all parts of your life. But it feels like there is because, you know, because we're about to talk about schizophrenic schizophrenia, bipolar disorder, medication. There's no vacations from, you know, those kinds of medications, as far as I'm aware. I'm not an expert. So it sort of creates this weird thing where is part of the non adherence coming from the way the medication is being talked about even by the doctor in the room?
- [10:21]
William Curb
Yeah, because right up there as one of the top reasons was social stigma. And drug holidays are a form of social stigma where you're like, you need to be the stop this so that you can be yourself. And yeah, I am more myself with on medication.
- [10:39]
Sky Waterson
So yeah, people don't necessarily have that expectation of you if you're on medication for other reasons, which is really, no one's like, oh, you should go off that as soon as you possibly can. And you should only be on it in order to get work done for other people. Which again, this is a problem that I have is the, you know, why, why are we taking it then? We're taking it so that the workplace can be happy. Like, you know, I mean I, I run help business owners so I'm a little bit sensitive about that conversation, you know, because if it's really that helpful, we should be taking it all the time, like you said, for your hobbies, for your work, for your personal life, just so you can play with your kids and be present those kinds of things.
- [11:22]
William Curb
Yeah. And I mean, I've had a friend that runs a group of kids and they're like, yeah, one of the kids regularly takes ADHD medication, but when we go out for events, his parents are like, we don't want to have him on this all the time. And so he goes extra ADHD on these trips because there's, you know, all this extra stimulation. And he's unmedicated for these things. And they're like, one time he ran into a parking lot and almost got hit by a car.
- [11:49]
Sky Waterson
Yeah.
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William Curb
There are side effects to not taking medication too.
- [11:52]
Sky Waterson
And you know, it's, it's everybody's personal decision. I don't take medication. I know a lot of people who really benefit from taking medication. But, but I think the interesting part is when the doctor recommends you take a holiday and then goes like, why aren't people doing this?
- [12:06]
William Curb
Yeah, but, yeah. And so the whole drug holiday thing then made the studies a little bit hard to track because was this something recommended by a doctor to not because, you know, what's the summer off then? They're not. Because the way they like looked at a lot of these studies is how often are people refilling their medication? Because that's the easiest way to kind of track this. And so if people aren't refilling it over the summer, then, oh, they've stopped their treatment.
- [12:31]
Sky Waterson
It was interesting as well. They did mention, you know, adherence to ADHD medication was comparable with estimates reported for other psychiatric and non psychiatric disorders. So it's not like this is just an ADHD thing, which is initially what I wondered because obviously ADHD fulfilling, you know, filling Medication prescriptions. These are all admin tasks. Some of them can be incredibly difficult to find and access. But it does seem like this is. This is actually a problem across many medications.
- [13:04]
William Curb
Yeah, I mean, I think so. There is a ton of social stigma around taking any kind of pills. Like, watched through a documentary recently about, you know, like, why are so many people on ADHD medication? And I was just like, this is terrible. This is only. Looking at this from. This is just social stigma on top of social stigma on top of social stigma. This isn't looking at the benefits that people receive from these things. They're just saying, like, oh, there's side effects and people. And I was very upset watching it, but it's. I can see. And then, yeah, you know, reading online about how difficult it is for some people to get their treatment, you know, the. Their pharmacy either makes it very difficult or their pharmacist is, you know, critical of them filling it, refilling their prescription. I'm very fortunate that it is incredibly easy for me to refill my prescription. And so that's. Oh, this is not a problem at all for me. But then I read about it.
- [14:01]
Sky Waterson
But for a lot of people, yeah, I work with a lot of clients for whom it's almost impossible. They have to. Maybe they've moved states and now they have to, you know, convince the state they're in that they still exist and they still need the medication. Sometimes there's no medication where they are, so they have to ring around to a variety of different places to get the prescription filled. You know, all of the things that can make it very, very difficult. Sometimes systems lapse or psychiatrists leave. That's the other thing I've had to tell people is like, hey, if somebody says that you have adhd, make sure you have a written version of that, because if that person disappears, you might have to do the whole. The whole thing again. There's many different ways that it can be very difficult to fulfill your prescription.
- [14:48]
William Curb
Yeah, right now I get my prescriptions through my primary care doctor, and I have moved cities, but I have not changed my doctor because I'm like, I don't. With this. Yeah, could be really inconvenient. And so, yeah, I'll just drive the extra 45 minutes to get to him because that makes more sense right now because I'm. Or it at least makes sense in my head because I'm about what I'm worried about could happen.
- [15:16]
Sky Waterson
Yeah, yeah. And I do want to just mention one more thing before, you know, before we jump off of this paper, which is that, you know, there was a discussion about, you know, expert opinion reviews versus actual reporting from original studies, which is. Which was really interesting. So expert opinion reviews were like, you know, doctors and people like what they thought was going on. They cited most commonly that the reason that this was happening was dosing, inconvenience and social stigma. But that wasn't discussed in the original studies. So I do think there is a. There's either a miscommunication or maybe people don't feel comfortable sharing that social stigma is the real reason and they want another reason. But there's definitely conflict there between what experts think is going on and what people think is going on.
- [16:08]
William Curb
Yeah. And it's. It is a very hard thing to study because this is the. People often citing social stigma is a hard thing for someone to do themselves because if they're feeling pressure on it, they're looking for reasons.
- [16:24]
Sky Waterson
Yeah, yeah.
- [16:25]
William Curb
And so it's very easy to be hit side effects. Those are something that is part of the social stigma is people talking about the side effects and zombie children and all that. And so it's very easy to point out. Yeah. Like that's why we don't want to do this. Interestingly, one of the least affected things was cost of the medication, which was an interesting. Like that was not in the top 10. It was like right at the bottom of the list.
- [16:53]
Sky Waterson
Yeah, that was so interesting. Yeah. Yeah.
- [16:57]
William Curb
And one other thing that I remember from Dobson's presentation was him talking about too, that there's an interesting switch in how this adherence because of the large group of women who are now being diagnosed and getting medicated because they want it. And so we're having a. We're seeing more people adhering to medication because it is something they're seeking out rather than being forced upon.
- [17:25]
Sky Waterson
Exactly, exactly. And for those of you who are in a position where you're wondering about treatment and you're wondering like, okay, but how am I even going to find the time? How am I even going to do this? You know, you could just message me dobson2025 on Instagram and I'm happy to share the paper with you. Share a prioritization filter to help you get focused to actually make some decisions about this. Because it is really important and it is something that I think a lot of us struggle with even, you know, I've worked with so many people who struggle with refilling their prescriptions.
- [17:59]
William Curb
Yeah.
- [17:59]
Sky Waterson
Just in case.
- [18:00]
William Curb
Yeah. We really want to make it. When you take medication, you want it to be easy to get through and you want to be have as few side effects as possible and with the highest magnitude effect as possible. And.
- [18:16]
Sky Waterson
Exactly.
- [18:17]
William Curb
While some people it's, they find it right away. It's, there's a lot of medications out there, so there's a lot of options of what might work for you.
- [18:25]
Sky Waterson
Yeah.
- [18:25]
William Curb
Or maybe you need to go a route where medication isn't the option. Hello.
- [18:32]
Sky Waterson
So you were just listening to a research recap. I'm Skye Waterson of Unconventional Organization. If you like that there's lots more information about ADHD and support for you@unconventionalorganization.com you can go ahead and check that out. Lots of free resources, lots of strategies. And if you want to join our programs, you can do that as well. And we'll see you there. Unconventional Organization.
- [19:01]
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