Why 50% of People With ADHD Quit Their Medication

Why do so many people start ADHD medication... and then quietly stop within a year or two?

In this Research Recap, Skye and Will unpack a systematic literature review examining why over half of all patients discontinue or significantly reduce ADHD medication within 2 to 3 years of starting.

This episode isn't about whether you should take medication.

It's about something more practical: what the data actually found about why people stop, where expert assumptions conflict with what patients reported, and how access barriers, drug holidays, and whether someone chose treatment for themselves all appear to shape long-term adherence.

If you've ever let a refill lapse and told yourself you'd sort it later, this episode will feel uncomfortably familiar.

What we cover:

• Why over half of patients discontinue ADHD medication within 2 to 3 years, and what the data found as the top reasons
• The gap between what experts assumed drove discontinuation and what patients actually reported
• How drug holidays, sometimes recommended by doctors, complicated how researchers tracked real adherence
• Why access barriers like pharmacy friction, moving states, and losing a prescriber show up as a real factor
• What the research suggests about people who sought treatment themselves versus those pushed into it

Want more of Will's work? Go check out HackingYourADHD.com or subscribe to his YouTube channel.

If you’re an entrepreneur with ADHD who’s tired of being asked “Why don’t you just hire/make a system/delegate?”  We’ve gotchu! 

1. Click here for a free copy of my 5-year-tested Focus Filter. Instant relief for work-related overwhelm.
2. Find out what’s holding you back. I’ll personally build you a simple plan to fix it. Click here to grab one.
3. Join my Focused Balanced Growth Program. If you’re tired of getting blank looks in masterminds full of neurotypical advice, this is for you. Weekly Monday Motivation sessions, plus content you can binge or dip into for strategies specific to you. Apply here.
4. Your Business Operations Built for Your ADHD Brain. Feel like you can never really delegate because you can’t explain how to do it? Struggling to hire someone who feels like a natural fit for your business? Let us handle it for you. We specialize in using our years of ADHD research and practical support to act as your fractional COO, handling the back-end operations in a way that feels light and keeps you focused. Learn more here.

Transcript

SPEAKER_00 0:00

One of the kids regularly takes some 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 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. There are side effects to not taking medication, too. But yes. So there is a ton of social stigma around taking any kind of pill. In this episode, we're going to be discussing a paper called Adherence, Resistence, 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 meds? And if not, why?

SPEAKER_01 0:36

When you told me the outcome, what they found in this paper, it it literally blew my mind. I had never really realized this before, but let's go into how they did it. 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.

SPEAKER_00 0:58

Yeah, like they're very interested in being like, well, if people are getting benefits out of this because uh, 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, most of the authors are connected with the Sinclair group, which is produces ADHD medication. I I didn't really mind that. I was like, oh yeah, that makes sense why they're looking into this. And they didn't find like the the results they published are like, yeah, this is a problem.

SPEAKER_01 1:25

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 intense thing, you know. 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.

SPEAKER_00 1:52

Yeah, so uh yeah, so let's get kind of get into what it this paper was, which was it's a meta-analysis looking at a lot of papers published between 1990 and 2013 when this paper came out. They were they were looking for papers that talked about hey, what are people staying on their medication um 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.

SPEAKER_01 2:14

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, etc. 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 do those kinds of studies.

SPEAKER_00 2:36

But 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 out from Bill Dobson, where he was like 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's a problem, you need to go get treatment. Oftentimes, having that external pressure is not going to be enough because you need to want to do this on your own. Because and 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. And so if it's a spouse, if it's work, you know, this is an area where you do want to have your own volition, uh, 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.

SPEAKER_01 3:36

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.

SPEAKER_00 4:14

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 meshylphenidate medications, and then you have you know things like guanfacine and all these other non-stimulant ones that so you have a lot of things that can cause different side effects. 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 gonna 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.

SPEAKER_01 4:57

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.

SPEAKER_00 5:24

One of the places that it was really interesting to talk about some of the limitations in this study also are like 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.

SPEAKER_01 5:58

Yeah.

SPEAKER_00 5:58

Uh you should be taking your medication very regularly because ADHD affects you in all aspects of your life and should not be focused pro 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.

SPEAKER_01 6:23

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, uh, 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 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.

SPEAKER_00 7:16

Yeah, because right up there, what 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 I am more myself with on medication than I'm not.

SPEAKER_01 7:32

So people don't necessarily have that expectation of you if you're on medication for other reasons, which is really that 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 uh the workplace can be happy, like, you know. I mean, I r 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.

SPEAKER_00 8:13

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 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. And it's just like there are side effects to not taking medication too.

SPEAKER_01 8:42

Yeah, 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?

SPEAKER_00 8:56

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? You know, what's the summer off, then they're not refayed 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're they've stopped their treatment.

SPEAKER_01 9:17

Exactly, exactly. 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.

SPEAKER_00 9:49

I mean, yeah, so there is a ton of social stigma around taking any kind of pills. Like I watched through a documentary recently about, you know, like why are so many people uh on ADHD medication? And I was just like, this is terrible. If 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, 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 I'm like, oh, this is not a problem at all for me. But then I read about it.

SPEAKER_01 10:32

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 round 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 system the whole thing again. There's many different ways that it can be very difficult to fulfill your prescription.

SPEAKER_00 11:17

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 if this could be really inconvenient. And so I'll just drive the extra 45 minutes to get to him because that makes more sense right now because I'm or it it at least makes sense in my head because I'm worried about what I'm worried about.

SPEAKER_01 11:39

Yeah, and it I do want to just uh mention one more thing before, you know, before we jump off this paper, which is that 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.

SPEAKER_00 12:27

It is a very hard thing to study because this is a 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. 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. So it's very easy to point out, yeah, like that's why we don't want to do this. And it's also uh just 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.

SPEAKER_01 13:02

Yeah, that was so interesting, yeah.

SPEAKER_00 13:04

One other thing that I remember from Dobson's uh presentation was him talking about too, that there's an interesting switch in how this uh 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 str we're seeing more people adhering to medication because it is something they're seeking out rather than being forced upon them.

SPEAKER_01 13:29

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 gonna find the time? How am I even gonna 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 I've worked with so many people who struggle with refilling their prescriptions.

SPEAKER_00 14:00

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 uh as possible. 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. Or maybe you need to go a route where medication isn't the option.

SPEAKER_01 14:19

Yes, both are fine. Thank you so much for listening to this episode of the ADHD Skills Lab. If you liked it, leave us a five star review. It helps other people learn more about us. And thank you so much to our wonderful team for making us sound good, look good. We couldn't do it without you.