Patient Case #2: Addressing Non-Adherence and Stigma of Adult ADHD


Stephen Faraone, PhD; Theresa Cerulli, MD; Craig Chepke, MD, FAPA; and Andrew J. Cutler, MD, discuss addressing non-adherence and the stigma of ADHD.

Stephen Faraone, PhD: This patient illustrates perhaps what might be one of the biggest problems in the pharmacotherapy of ADHD and that is non-adherence. She was on methylphenidate but stopped taking it for difficulty falling asleep, irritability, and probably some other reasons. What do you all do to try to keep your patients on medication? Because obviously, if they're not taking the medication, it's not going to help their ADHD.

Andrew J. Cutler, MD: Well, just like we must individualize our treatment for efficacy, we have to individualize for adherence. And I always try to ask questions about what is about the medication that is making it hard for you to stay adherent. What is it you don't like? What is it you're worried about? What is it you're concerned about? You'll hear so many different concerns and stories, and then you can more intelligently address those concerns if you understand what the issues are, is it a specific adverse effect? Is it a theoretical risk? Is it something a friend told them? Is it the way the medicine makes me feel, the way it doesn't make me feel?

Theresa Cerulli, MD: Along those same lines, I collaborate with the decision-making with regard to which medications and it helps if you've got buy-in from the patient in the beginning. If you make that decision together, and you know there's sort of a flow chart in both of your minds, if this isn't a good fit, we know what to do next, and we know why we're picking this one. If it's a 'we' decision, the chances of adherence are going to go up.

Andrew J. Cutler, MD: Shared decision making, absolutely.

Craig Chepke, MD, FAPA: To me, it all comes down to education and circles us back to the discussion of the drug holidays when patients have the impression that, "Oh, well, if I'm not working, if I'm not in school, then I don't need it," and that is a kind of pervasive thought. The way that I talk to patients about it, when prescribing stimulants, that is, "I'm not prescribing you this to make you a super student, or a super employee, I don't prescribe performance-enhancing drugs. This is a treatment for a neurodevelopmental disorder that you have and that's why I recommend that you take it every day." And that understanding of the medication, I've found, goes a long way. Adherence isn't perfect still, it never will be with any patient, any condition, but it helps if they understand it as more than just a glorified performance-enhancing drug.

Andrew J. Cutler, MD: Another issue we have to always be aware of is cost and access, it's the real world, of course. There are many things now we can do, pharmaceutical companies have programs, copay cards, various things, so we must be creative, understand what their formulary is, and their payment options and things like that. We need to look at the whole picture of what's going on.

Stephen Faraone, PhD: Theresa, you had mentioned stigma earlier in the program, I wonder, is your experience with the stigma affecting people not wanting to take medication? Is that something you've seen?

Theresa Cerulli, MD: I will share, that it’s been both personally and professionally, even in my own household it has taken years, and years, and years, working with my daughter who is very bright, and a good student, and an athlete, and an artist. You would never, make the diagnosis without mom having some background in this.

Andrew J. Cutler, MD: She's a unicorn, Theresa.

Theresa Cerulli, MD: Andy calls her my unicorn, she has just got that unique brain but at the same time I find her FitBit and golf balls in the laundry banging around in the dryer on a regular basis. It's helpful to know what ADHD can look like on a personal level in the household. That said, the stigma is a problem, even in these successful kids, and successful adults that carry this issue with self-esteem and having a diagnosis and the idea of having to be medicated. It's a tough hurdle to get past. The labels in our field are so important that we clinically have some language to talk about patient care and to be able to have the DSM diagnoses, to be able to meet criteria for the diagnosis, and therefore the criteria needed for being able to treat a condition. But it does, unfortunately, feel like putting people in a box when we do that. Trying to normalize, or at least help normalize, using terminology that the patients can relate to, and the symptoms that they can relate to, rather than just the label is important. That's how I've been able to help people get past the stigma.

Stephen Faraone, PhD: It's a big problem because people feel that they're a failure if they need the medication. A good friend and former colleague at Mass. General, [Massachusetts General] Dr Tom Spencer, used to use the analogy of eyeglasses with his patients. He would say, "Hey, I need to wear glasses, if I take my glasses off, I would have failed in school, I would have not been able to be a psychiatrist, but I use these glasses because my eyes needed them so I can see what's around me." He has done that simple analogy to help people understand.

Andrew J. Cutler, MD: That is a great analogy, I'm going to use that now. Another thing that I use is an area that you are, of course, one of the world's authorities on, and that's genetics. I'll tell them that this a highly genetic condition, you were likely born with this, this is not your fault, you inherited this. And I find that taking it out of the realm of behavioral issue or bad parenting, I like Craig's comment that it's a neurodevelopmental genetic disorder, that may help to some degree as well because there is so much misperception around this.

Stephen Faraone, PhD: Many of these adults have been told for years that they just weren't trying hard enough, and they see the medications as a crutch so that they don't have to try, but that creates a stigma. You're right about that.

Theresa Cerulli, MD: Another thing that just popped into my mind as we're thinking back to my comments that we don't do objective measures, we don't do MRIs and functional MRIs and SPECT scans. I will tell you something that I have done with my patients way back was pre and post - helping review with them what the medication is doing in the brain. Looking at pre and post-stimulant medication in SPECT scans, what it looks like in the brain, and how we're literally turning it on - those pictures are worth a thousand words to say, "This is what we're trying to do with medication, it's trying to engage circuitry that's just a little too quiet, that makes it hard in the frontal lobe to focus." That has gone a long way in people grasping what we're trying to accomplish, because otherwise, as the patient, you're saying, "Why would I take a stimulant when I'm already fidgety and restless, and then why are you giving me a stimulant? That makes no sense." But when you can turn looking at the neurobiology from a teaching perspective, not a diagnostic perspective, it has been helpful.

Andrew J. Cutler, MD: Theresa, I do the same thing. I have on my laptop, some of the classic neuroimaging studies, and I will show them, this is before medication, this is after medication. An ADHD brain versus a non-ADHD brain. And it's helpful to see something like that, that visually reinforces the medical, neurological, nature of this condition.

Transcript edited for clarity

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