Unmet Need: Identifying Key Limitations in ADHD Management

Dr Greg Mattingly, Dr Rakesh Jain, Dr Andrew Cutler, and Desiree Matthews, PMHNP-BC, examine limitations in current attention-deficit/hyperactivity disorder (ADHD) care. After watching the video, test your knowledge with the quiz in the sidebar. 

To learn more, view the full series: ADHD Beyond The Core – What We’re Missing and Why It Matters. 

Greg Mattingly, MD: Hello, and thank you for joining us. Welcome to this educational series on ADHD, Beyond the Core—What We're Missing and Why It Matters. I'm Dr Greg Mattingly, an Associate Clinical Professor at the Washington University School of Medicine, and the current President for the American Professional Society of ADHD and Related Disorders. I'm excited to have an all-star cast here with me today. Joining me today is Desiree Matthews, my good friend Rakesh Jain, and Andy Cutler, who we've been friends for quite a while at this point. Desiree, tell the audience a little bit about yourself.  

Desiree Matthews, PMHNP-BC: Absolutely. Thank you for that. My name is Desiree Matthews. I'm a board-certified psychiatric nurse practitioner. Spent many years in community mental health, now transitioned to a private practice and primarily a telehealth focus with adults. So, I'm really excited to be here to talk about ADHD because I see a lot of it in my clinic.  

Rakesh Jain, MD, MPH: Hi everyone. My name is Rakesh Jain, and thank you, Greg, for the very warm welcome. I am a psychiatrist—a child, adolescent, and adult psychiatrist. I am a Clinical Professor of Psychiatry at Texas Tech University School of Medicine in Permian Basin, and I have a clinical practice. And ADHD has been a passion for well over 3 decades, and those ambers are burning hotter than they ever have.  

Mattingly: And certainly not last and not least. But, Andy, tell us a little bit about yourself.  

Andrew Cutler, MD: Thanks so much, Greg. And yes, what a warm welcome. What a pleasure to be here with such a wonderful panel. I'm Dr Andy Cutler. I am a Clinical Associate Professor of Psychiatry at SUNY Upstate Medical University, and I'm also the Chief Medical Officer of the Neuroscience Education Institute. I'm board-certified in both internal medicine and psychiatry and did research training on dopamine receptor pharmacology many years ago, which led me to ADHD. And I've been studying ADHD medications for 25 years now and have really been excited to help get newer medications FDA approved that many of us have worked on.  

Greg Mattingly, MD: Hello, and thank you for joining us. Welcome to this educational series on ADHD, Beyond the Core—What We're Missing and Why It Matters. I'm Dr Greg Mattingly, an Associate Clinical Professor at the Washington University School of Medicine, and the current President for the American Professional Society of ADHD and Related Disorders. I'm excited to have an all-star cast here with me today. Joining me today is Desiree Matthews, my good friend Rakesh Jain, and Andy Cutler, who we've been friends for quite a while at this point. Desiree, tell the audience a little bit about yourself.  

Desiree Matthews, PMHNP-BC: Absolutely. Thank you for that. My name is Desiree Matthews. I'm a board-certified psychiatric nurse practitioner. Spent many years in community mental health, now transitioned to a private practice and primarily a telehealth focus with adults. So, I'm really excited to be here to talk about ADHD because I see a lot of it in my clinic.  

Rakesh Jain, MD, MPH: Hi everyone. My name is Rakesh Jain, and thank you, Greg, for the very warm welcome. I am a psychiatrist—a child, adolescent, and adult psychiatrist. I am a Clinical Professor of Psychiatry at Texas Tech University School of Medicine in Permian Basin, and I have a clinical practice. And ADHD has been a passion for well over 3 decades, and those ambers are burning hotter than they ever have.  

Mattingly: And certainly not last and not least. But, Andy, tell us a little bit about yourself.  

Andrew Cutler, MD: Thanks so much, Greg. And yes, what a warm welcome. What a pleasure to be here with such a wonderful panel. I'm Dr Andy Cutler. I am a Clinical Associate Professor of Psychiatry at SUNY Upstate Medical University, and I'm also the Chief Medical Officer of the Neuroscience Education Institute. I'm board-certified in both internal medicine and psychiatry and did research training on dopamine receptor pharmacology many years ago, which led me to ADHD. And I've been studying ADHD medications for 25 years now and have really been excited to help get newer medications FDA approved that many of us have worked on.  

Jain: Well, hello, dear colleagues. Welcome to this next section. The topic is Unmet Needs—Identifying Key Limitations in ADHD Management. Now, before I turn to my colleagues, I thought I might give us a brief introduction on the topic. Because we know ADHD is indeed a multidimensional disorder that definitely extends beyond the core symptoms, and treatment planning should address these associated features and comorbidities for comprehensive care. So, despite potential benefits, many challenges remain with current stimulant treatment. Did you know this? Fewer than 30% report full satisfaction with their current stimulant treatment. And approximately 61 to 73% of individuals will change treatment within a mere 12 months. Residual symptoms are a major challenge. Almost half of those treated with ADHD medications experience residual symptoms with emotional dysregulation. And nearly 40% on stimulants face residual issues with executive dysfunction, and anxiety symptoms may not improve. And you know what? They can potentially worsen.  

So, adverse effects, oh my gosh, the burdensome treatment-related side effects can contribute greatly to poor adherence and negatively affect quality of life. Ninety-five percent of adults in the United States receiving treatment experience—they really experience at least 1 residual symptom that's connected to their ADHD or an adverse event—95%. That's 19 out of 20. Adverse effects may impact adherence and long-term outcomes is a very well-known effect. So, to better understand this, we have our colleagues here. And, Desiree, I'm going to start with you, if I may. Changing treatment is quite common due to residual symptoms and adverse events, and this lends itself to repeated office visits and increasing copay. What is going on here? Tell us more.  

Matthews: Absolutely. So, I think this is one of the big problems that I run in with individuals trying to really optimize their treatment plan. We see problems with tolerance. I have a lot of women with even comorbid anxiety. And, unfortunately, our current treatments can sometimes even worsen that, in my clinical experience. And think about how burdensome it is, not even for the clinic, but the patient to come back every 1 to 2 weeks for medication adjustments, titration, switching. And this comes not without cost—picking up new medications, doses, copays. This actually can be quite costly. And I've had individuals kind of throw their hands up and say, “This is just too much. I really just don't even want to consider treatment because it costs too much and I'm just not feeling satisfied.”  

Jain: Wow. So, not everything is good in paradise. So, despite the fact the clinical trial results with stimulants often look remarkably pristine, the reality is the burden of low efficacy in some patients and adverse events and this inability to treat comorbidity is a major challenge. Greg, you heard Desiree talk eloquently about the unmet needs on this issue. I would love to hear your thoughts. 

Mattingly: You know, Rakesh, you and I have been part of some surveys and studies where we looked at breakthrough symptoms, and that certainly is one of the gaps in treatment of certain patients. But I think let's talk about the practical burdens. And the practical burdens is all stimulants—Andy, and you know this—they require monthly refills. These are C2 medications that have a lot of restrictions. They should have restrictions. But that places an undue burden both on the clinician and on the patient. If you travel away from home, if you're trying to get a refill—I have a physician right now who's lecturing out of state and can't get a refill of his medication. For my practice, every day having to go in and refill prescriptions that have to be refilled on a monthly basis—can't be sent ahead of time, it's difficult to give refills on them. So, that is a burden. We also know stimulants, based on the state that you practice in, every state has differences in restrictions. In my state, Desiree, nurse practitioners can't write refills for stimulants. That requires the physicians in our group to have to overwrite their medicines, which once again creates a burden for the practice, and it creates a burden for the patients where they're waiting for those refills to come through the system.  

Jain: Wow. So, we are highlighting some of the challenges. Sounds like, so far, based on the conversation, we have challenges with not every patient gets appropriate response. Number 2, there's adverse events. And looks like, based on what you two are sharing, there's sometimes iatrogenic damage, meaning our treatments themselves can cause problems. Andy, you heard our 2 colleagues speak about it. Would you agree with their commentary on the unmet needs? And please do expand on it. You have a lot of experience. Tell us more.  

Cutler: Yeah, in addition to that, what I'd like to add is the burden of taking more than 1 medication. How many of our patients do we have who are on a stimulant and let's say an SSRI or some other kind of medicine to address anxiety or depression? And that's, like Greg said, just the hassle of managing a controlled substance by itself. But now, we have another medicine to consider. Also, the side effect thing I really want to mention. That, very often, has limited my ability to optimize the dose because of the side effects or maybe the duration doesn't last all day. So, I think there are many challenges. Stimulants can work for core symptoms, but ADHD is so much more, we know, than just inattention and hyperactivity. There are so many challenges with mood, with anxiety, with executive function, with circadian rhythm in the sleep-wake cycle. And so, it would be nice if we had medicines or if we could think about medicines that could address all of those things.  

Jain: That's such a good point, and if I may just reflect on what you three have shared with me is there's no shame in criticizing the shortcomings of anything. In fact, to not worry about shortcomings of stimulants is abdication of clinical responsibility. By the same token, we should not think of stimulants as second-class citizens. They are first-world citizens in many ways, but they are not perfect and they have challenges. It's duration. That's an unmet need. We haven't yet touched upon the fact that very often there's an abrupt on and abrupt off. We also know there's a rebound phenomena. We also know there's tolerance. So, in the last few minutes that we have left, I'm going to invite each of you to perhaps offer our listeners, people who are watching this video, an encapsulation of what do you think are the top 3 greatest unmet needs in the world of ADHD?  

Matthews: Wow, that's a good one. So, I think for many of my individuals, I see young adults—they're just getting out of their family's home, college. They're getting their first apartment. And I have a lot of unmet needs in terms of executive dysfunction. Unfortunately, the core symptoms may improve with our treatments that we have, but executive dysfunction is still quite prominent, and it causes a lot of distress and impairment. Feeling overwhelmed, not being able to just manage day to day, get the bills paid, juggle class, their work schedule. So, it causes a lot of exacerbation of anxiety. And sometimes even, unfortunately, patients start to get depressed. They feel shame, guilt. “I'm just not good enough and I don't know why. I am in treatment, but I'm still not fully better.”  

Jain: And executive dysfunction is often a 24/7 disorder. Okay, wonderful. Thank you very much. Sir?  

Mattingly: I'm going to give you a practical, in the trenches unmet need. And that's just access and availability. I can't tell you how many dozens, if not hundreds of university students who have tried to shoot through the semester without medicines because it was too hard to find a prescriber that will prescribe at their university. Quite often, that's met with a semester that things didn't go as well as they should. We've had a nationwide shortage of many of our ADHD medications because they are controlled substances. So, I've had children, adolescents, and adults who've had gaps in care. And, quite often, those gaps affect emotional outcomes, educational outcomes, financial outcomes, relationship outcomes. So, I think access and availability have been really 2 of the biggest gaps in unmet needs in the last several years.  

Jain: Thank you for the practical worries that we need to have about that particular class of medications, and to solve it is important. It's not enough to just talk about problems, but also to solve it. Andy, you have the last word, if you will, just maybe a quick summation on what you think might be the one unmet need that practitioners don't often think about, but they ought to. 

Cutler: Absolutely. Well, first of all, terrific answers. And Rakesh, this is something you and I and Greg certainly have been talking about a lot. And that is going beyond symptom control and really trying to treat the whole range of impairments and quality of life and functional issues that come along with ADHD. This is really almost a crippling, in some ways, disorder Also, we haven't talked yet—we can talk later about comorbidities and the medical complications. So, really thinking holistically about the patient all the way around.  

Jain: Well said. So, if I may summarize for our colleagues, this conversation on unmet needs is pretty rich. There is real reason to worry about underdiagnosis, undertreatment. But there's also good reason to believe that our current treatment options really don't serve all the needs of our patients. You talked about executive dysfunction. You talked about access. You talked about comorbidities. And those unmet needs really do deserve our attention. Well, thank you, dear colleagues, for joining us in this conversation. And I look forward to being with you in the upcoming sections on this conversation.  

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Andrew Cutler, MD 
Dr Andrew J. Cutler is a clinical associate professor of psychiatry at SUNY Upstate Medical University in New York, and he serves as the chief medical officer of the Neuroscience Education Institute. He received his MD from the University of Virginia School of Medicine, where he was also elected to the Alpha Omega Alpha honor medical society and received the Merck Award for outstanding medical scholarship. He completed his medical internship, internal medicine residency, and psychiatry residency at the University of Virginia Medical Center, where he served as chief resident of psychiatric medicine and did research on dopamine receptor pharmacology.  Dr Cutler then served as the first assistant professor and director of psychiatric medicine at the University of Chicago.  He is board certified in both internal medicine and psychiatry. Dr Cutler has also been the principal investigator on over 400 psychiatric and medical clinical trials.   

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Rakesh Jain, MD, MPH
Dr Rakesh Jain is a clinical professor at the Texas Tech University School of Medicine. He attended medical school at the University of Calcutta in India. He then attended graduate school at the University of Texas School of Public Health in Houston, where he was awarded a “National Institute/Center for Disease Control Competitive Traineeship.” His research thesis focused on the impact of substance abuse. He graduated from the School of Public Health in 1987 with a Master of Public Health degree. Dr Jain served a 3-year residency in Psychiatry at the Department of Psychiatry and Behavioral Sciences at the University of Texas Medical School at Houston. He then obtained further specialty training, undergoing a 2-year fellowship in child and adolescent psychiatry. In addition, Dr Jain completed a postdoctoral fellowship in research psychiatry at the University of Texas Mental Sciences Institute in Houston. He was awarded the “National Research Service Award” for the support of this postdoctoral fellowship. 

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Desiree Matthews, PMHNP-BC 
Desiree Matthews is a board-certified psychiatric nurse practitioner with expertise in treating patients living with severe mental illness. Beyond clinical practice, Desiree has provided leadership in advocating for optimal patient outcomes and elevating healthcare provider education. Desiree is the founder and owner of Different MHP, a telepsychiatry practice founded with the mission of providing affordable, accessible, precision-focused, integrative psychiatry to patients through a rich and comprehensive mentorship of the health care providers within the company. 

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Greg Mattingly, MD 
Dr Greg Mattingly is a physician and principal investigator in clinical trials for Midwest Research Group. He is also a founding partner of St Charles Psychiatric Associates and an associate clinical professor at Washington University. A St Louis native, he earned his medical degree and received a Fulbright scholarship while attending Washington University. Dr Mattingly is board certified in adult and adolescent psychiatry and is a diplomat of the National Board of Medical Examiners. Dr Mattingly has been a principal investigator in over 400 clinical trials focusing on ADHD, anxiety disorders, major depression, bipolar disorder and schizophrenia. Having served on numerous national and international advisory panels, Dr Mattingly has received awards and distinctions for clinical leadership and neuroscience research. Dr Mattingly is also the President for the American Professional Society of ADHD and Related Disorders and is on the Scientific Advisory Board for the World Federation of ADHD.  

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