Clinical Burden of ADHD and Impact on Quality of Life

Theresa R. Cerulli, MD: The questions that come to mind is, what is the clinical burden of ADHD [attention-deficit/hyperactivity disorder] overall in young children, adolescents, and adults? How is it impacting quality of life? I’ll weigh in with the data, but first I want to hear from a clinical perspective. Dr Feld, do you want to get us started?

Michael Feld, MD: Do you mean the amount of kids who have ADHD or just the burden?

Theresa R. Cerulli, MD: What this looks like in day-to-day life, including the relationships. People think it’s something happens at school and work.

Michael Feld, MD: Everybody thinks everybody has trouble with inattention or a little impulsivity. But the profound part about ADHD, which makes it different from anything we look at, is that we look closely at every area of life. We know that ADHD untreated—mild, moderate, or severe—can impact every area of your life: what happens in the morning, relationships, how you function in the morning, being a parent, being a child, how you impact your siblings and your parents. We know what it’s like during the day. ADHD kids do not reach their academic potential and have much lower academic achievement. They also have problems with peer relationships. They have problems engaging in after-school activities, whether it’s sports, theater, or other activities. They’re often not included in interacting with peers or invited on dates. In taking care of them, whether it’s for their parent, grandparent, or a sibling, there are a lot of struggles getting along with them. Their evening functioning is often impacted. When you look at how ADHD impacts life, we look at multiple areas of life: nonacademic and nonwork. When you open your eyes to morning, daytime, and night in multiple areas of life, that’s when you start realizing there’s ADHD and the profound impact of it. It separates from the anxiety and the depression and some of the comorbidities.

Birgit H. Amann, MD, PLLC: It’s a very powerful disorder when it’s left undiagnosed and untreated.

Andrew Cutler, MD: Yes. If you look at the developmental trajectory, it can present differently. There are different tasks, challenges, roles, and responsibilities that we assume over time. For instance, kids eventually start driving and having romantic relationships, and sex comes into the picture. They’re exposed to substances of abuse. There’s a problem with accidents and medical comorbidities. Of course, they have to start living independently, manage their own lives, and figure out where to live. They have college, and they have to balance a schedule. They have to balance their finances, their checkbooks, pay bills, things like that. Then there are parental and caretaking responsibilities. It affects every aspect of life.

Michael Feld, MD: I’d like to add 1 thing. I’m psychoanalytically oriented, but I totally believe in B.F. Skinner and Ivan Pavlov. Every kid with more than mild ADHD who comes into my office, and most adolescents and adults, has problems with self-esteem and confidence. They’re in cycles of patterns of getting negative reinforcement. Skinner would say, “If you can’t get positive reinforcement, you’re going to keep getting better at getting negative rewards.” We really need to break the cycle toward success and positive rewards of people. Because every ADHD kid underlying needs to build more confidence.

Theresa R. Cerulli, MD: They have to find what they’re passionate about. Right, Mike?

Michael Feld, MD: Right. For sure.

Theresa R. Cerulli, MD: What’s exciting and interesting and stimulating for activities? This is a topic near and dear to my heart, so I want to weigh in from a personal perspective. I have a 17-year-old daughter with ADHD, almost 18 years old. We recently went through getting her driver’s license and how anxiety provoking it is for the family member and the parent when this happens with an ADHD kid, because there’s a problem with focus, concentration, and impulse control, including behind the wheel of a car. Driving injuries and crashes are big part of the morbidity and mortality of this disorder. Before I said, “We’re talking about school and work for folks with ADHD.” No, it’s far more than that. We’re talking about some serious potential consequences for untreated ADHD.

Andrew Cutler, MD: Yes. Theresa, we hear about the drug holiday idea all the time. What I tell patients and their families is, “I don’t want to be on the road with you if you’re not on your medication.”

Birgit H. Amann, MD, PLLC: The other thing is that, because these adolescents are driving, driving time is most commonly after school in the evenings. As we get into more discussion around our treatment options, we need to make sure we’re covering them into that time in the evenings when they’re behind the wheel.

Andrew Cutler, MD: Excellent point.

Theresa R. Cerulli, MD: Absolutely.

Michael Feld, MD: Going back to what Andy said, this makes it a 7-day-a-week, 12-month-a-year disorder.

Theresa R. Cerulli, MD: ADHD is prevalent and it’s persistent. Andy, you threw out a statistic earlier with regard to Maggie Sibley’s data in the American Journal of Psychiatry in February. About 90% will persist into adulthood with ADHD. This does not go away. To clarify and not butcher Maggie Sibley’s data, which were phenomenal, let me be clear what I mean. It’s not that 90% of these kids have full-blown criteria their entire lives. Only about 10% will meet full criteria throughout; it’s not getting better. But the flip side is that only 10% get better and have it go away and stay away. In other words, they stay in remission. That’s only 10% as well. Everyone else falls somewhere in between. It’s like a sine wave curve, a waxing-and-waning picture of ADHD where, depending what’s happening in their lives and circumstances, they’ll have symptoms and functional impairments. There will be times when they’ll look asymptomatic, and then there will be times when they meet full criteria for ADHD. That’s the majority of the population.

Andrew Cutler, MD: Theresa, that’s interesting. Over the years, I’ve noticed that sometimes adults present when something good is happening in their lives. They have another child, but now they have more to manage. They get a promotion at work, and there’s more cognitive load. They want to go back to school, finish their degree, or get a new certification. Those are times when the stress and cognitive demand increase.

Theresa R. Cerulli, MD: Absolutely.

Michael Feld, MD: I have a fun thing to add to that. A lot of us treat the kids also, right? But then we treat their parents. I’ve had multiple times where I’ve diagnosed and treated a parent. More than a few times, we’ve been able to take the child off their medication.

Andrew Cutler, MD: Oh, my.

Michael Feld, MD: The life, structure, and routine, showing passivity, the lack of anger at home has shifted it away. The parents being treated has made it much easier to compensate the kid’s ADHD.

Andrew Cutler, MD: Interesting.

Theresa R. Cerulli, MD: That’s such an interesting comment. I haven’t thought about that or reflected in my practice. Very interesting.

Alice Mao, MD: I have a vivid memory of a young woman who came in who was a law student. When she came in, she was very disheveled. Her hair was all over the place. She was carrying all sorts of notebooks and trying to organize herself. She told me that when she was younger, she was treated for ADHD. Because she was bright, she was able to compensate quite a bit. Her parents took her off medications in high school because she didn’t want to take them anymore, and she was not as hyperactive or having any behavioral problems. She was so bright that she managed to get through college without medications. However, then she got to law school and she was really struggling. She said, “I’m studying longer and harder than all my peers, but I’m still not able to pass. I’m really worried I’m going to flunk out of law school.”

We restarted her on medications. There had been medical advances at that point. There were treatments that worked well for her. She graduated No. 5 in her law school class, and she was so proud and happy. The difference that I saw from her first appointment to when she was coming in for follow-up appointments was amazing. ADHD can impact many things in terms of being able to not only do the work but also be more successful and perhaps make better grades. Her grooming, her poise, and her confidence had improved because she was doing so well. I was so proud of her and so excited that she had decided to resume treatment. She did that on her own, even though in high school she was the 1 who had told her parents she was no longer going to take the medications. It made a huge difference in her life.

Transcript edited for clarity