His goal is better diagnosis, treatment -- and life -- for adults with ADHD

Host Amber Smith: Upstate Medical University in Syracuse, New York invites you to be "The Informed Patient" with the podcast that features experts from Central New York's only academic medical center. I'm your host, Amber Smith. A distinguished professor from Upstate was named to a committee that will recommend guidelines for the diagnosis and treatment of attention-deficit/hyperactivity disorder in adults. The professor is Stephen Faraone, from psychiatry and behavioral science and neuroscience and physiology at Upstate. He's also the president of the World Federation of ADHD.

Welcome back to "The Informed Patient," Dr. Farone.

Stephen Faraone, PhD: Thank you. Nice to be here.

Host Amber Smith: Now, the American Professional Society of ADHD and Related Disorders has a steering committee that will make recommendations about the diagnosis and treatment of ADHD in adults.

You were internationally known for your research in ADHD. So you were asked to be on this committee. How many other researchers will participate with you?

Stephen Faraone, PhD: The committee itself: a fairly large committee, about 30 people, from different health professions that are involved in treating ADHD in adults It will be headed by a steering committee of I think it's five of us, myself, including Len Adler of NYU, David Goodman from Johns Hopkins, Tom Spencer, retired, formerly from Harvard, and Frances Levin from Columbia.

Host Amber Smith: Do you think it's going to be difficult for five scientists to agree on all aspects of diagnosis and treatment?

Stephen Faraone, PhD: Well, it's more than five. So the whole committee of 30 has to come up with these consensus guidelines. We use a technique called the Delphi method, which is a well-known, well-respected methodology for bringing groups to consensus. So it's not as difficult as it might seem, because I've done this process for other projects in the past.

And to keep it simple, potentially what it means is we start out with the group generating potential guidelines, and then we survey all group members as to what they think about the necessity of each of these guidelines. And we use that survey data to figure out which guidelines do everybody like, which ones do everybody not like, and which ones are controversial.

And then we discuss the controversial ones in teleconferences. So people can understand why some people dislike or like particular guidelines. And then we do a further survey, and this iterative process, surprisingly is very good at bringing professionals together to come up with what are the top recommendations for a particular disorder, in this case, ADHD in adults.

Host Amber Smith: Can you anticipate areas that might be controversial or that might spur debate among the experts?

Stephen Faraone, PhD: So I expect that most of the areas won't be controversial because some of these are well-known principles that anybody should use. For example, when diagnosing a patient with ADHD, it's important to document that the symptoms cause impairment to avoid overdiagnosing the disorder.

I'm almost certain that our committee will agree. this guideline or some form of it is important for us to have. I don't think there'll be controversy. It may be decisions might have to be made about, how one recommends sequences of treatments. And so in some of the nuances and subtleties, there may be some disagreements that need to be resolved along the process, butI wouldn't even use the word "controversy." What I would say is That experts sometimes have different emphases on which treatments or which diagnostic approaches should be used, and, after discussion, those will probably be resolved fairly easily.

Host Amber Smith: We hear about attention-deficit/hyperactivity disorder in schoolchildren, but we don't necessarily hear a lot about it in adults. Is the disease the same in adults as in children?

Stephen Faraone, PhD: You make a good point about people not being Informed about ADHD in adults, and that's because of a bias that occurred back in the 1960s and '70s, when ADHD first, came to prominence, in the United States. Essentially, people viewed it as a childhood disorder because that's where it was first discovered.

And yet subsequent studies showed that when these children grew up, many of them, about two-thirds, in young adulthood continued to have symptoms of ADHD in adulthood. So it's extremely important that people in the community recognize that ADHD doesn't disappear, it's a very real phenomenon that incapacitates some adults and makes their lives very difficult.

Host Amber Smith: How many adults do you think might have ADHD?

Stephen Faraone, PhD: Well, we know from probably the best population study in the United States that it's approximately 5%. If you look at the worldwide prevalent studies, which have more data, if you pulled all that data together, you'd come up with a lower estimate, around 3%.

So I like to say between 3% to 5% of adults will have ADHD.

Host Amber Smith: And are these adults that have been diagnosed, or do you find there's a lot of adults who maybe have this, but haven't been diagnosed?

Stephen Faraone, PhD: So most have not been diagnosed because the disorder was not recognized. As a result of that, the teaching about ADHD in adults in medical schools and residencies in psychology programs is very, very slim.

For example, when I was a psychology graduate student doing my PhD in clinical psychology, we learned zero about ADHD in adults, zero. One of my colleagues did a survey of medical school curricula and found that ADHD in adults was rarely discussed, and because of that, most primary care doctors have not heard of it, are not comfortable treating it, and even many psychiatrists are not comfortable treating the disorder.

And then on top of that, of course, the public doesn't really know about it, so when they experience these symptoms, they don't know what to do. Consider the difference, right? Back in the 1960s, people didn't really understand depression. Now it's well understood by the public, so if somebody is depressed out in the world, they will probably recognize it, or loved one will recognize it. They'll bring it to the attention of their primary care doctor or psychiatrist. That physician will understand what it is and will treat it.

But it's not the case for adult ADHD. An adult with ADHD is experiencing those symptoms and might be very impaired in their life, having difficulties with their spouses, not being able to parent very well, not doing well at work, having frequent changes of employment. They won't be thinking, "Oh, well, this is ADHD." Their spouse won't be thinking, "Oh, this is ADHD. We should go to the doctor."

And even if they did, many prescribers, many physicians, many psychologists won't, to this day, unless they're in academic medical centers, won't recognize this disorder as being valid in an adult and won't be equipped to treat it. It's a sad state of affairs.

Host Amber Smith: Did the adults who have ADHD have this condition as children, and it went undiagnosed during childhood?

Stephen Faraone, PhD: Yes, many of the adults who come to clinic these days were not diagnosed in childhood. Some of them, of course, were, but many of them weren't, and the reasons for that lack of diagnosis: maybe they grew up in an area where people didn't really recognize ADHD in kids very well, sometimes they had a mild case of ADHD in childhood; it didn't really emerge with severity until late adolescence or adulthood. So there are a number of reasons why, or sometimes even self-medication, somebody starts using drugs, smoking at an early age and they self-medicate their symptoms.

So people don't see the ADHD because there's lots of other problems going on. This is a big issue that many people don't understand, including health professionals. And that is that psychiatric disorders tend to co-occur with one another. So people with ADHD usually have another condition, typically it's depression or anxiety or substance use disorder.

So what'll happen sometimes is people will see those disorders, and those will be diagnosed and dealt with, but they won't recognize the ADHD.

Host Amber Smith: This is Upstate's "The Informed Patient" podcast. I'm your host, Amber Smith. I'm talking with Dr. Stephen Faraone. He's the president of the World Federation of ADHD, and he's a distinguished professor of psychiatry and behavioral science and neuroscience and physiology at Upstate.

What are the symptoms that may lead an adult to ask a primary care provider, if they might have ADHD?

Stephen Faraone, PhD: Well, people first recognize they have a problem because they're impaired in their life. They're not doing well at work. They're fighting with their spouse, difficulty parenting. And then, they may have heard through the media, and sometimes on the internet, and social media talks a lot about ADHD these days.

They may hear about ADHD, and they may realize that "I'm kind of like that. I'm a little impulsive. I tend to barge into conversations and interrupt people. I can be kind of inattentive. Sometimes I'm driving, I'm not really paying attention to what's on the road. In fact, I had a car accident last year and it was really because I was paying attention to my cellphone, not to what was going on, on, the road."

So those kinds of symptoms. It's typically being very disorganized in their life, not being able to organize things, being late, procrastinating. Those are very common symptoms of ADHD in adults. They're not typically hyperactive, like kids are. Kids will be running around, climbing on furniture. Adults with ADHD don't have that symptom, but they will feel restless in situations that require them to stay seated for long periods of time. So they don't do very good, for example, at a two-hour conference where they have to sit around a table, talking to people. They're the people in the room actually that will get up and pace around.

They typically say it helps them think, but in many cases, this is ADHD. They just can't sit still, but it's more impulsivity and inattention, which, then, the inattentive part is associated with being very disorganized.

On top of that, there's another set of symptoms that aren't official symptoms in the diagnostic manual, but they occur a lot in adults with ADHD, and those are symptoms of emotional dysregulation. Most of us, when we're faced with an emotional situation, we can soothe ourselves. We can calm down. We can get back on track. A classic example is road rage. All of us have had a situation where we're driving, and another motorist does something that we think is stupid, and we get maybe mad at them because they cut us off.

Most of us, OK, we might get upset for a few minutes, but we calm down. But people who can't regulate their emotions will feel this intense emotion. And instead of regulating it back to a normality, they'll feel an intense emotion, and then they'll act on it. And so they'll do something ridiculous, like they'll chase the other person or maybe get into a car accident or maybe get into a fight. And these are the kinds of symptoms that adults with ADHD will start to recognize in themselves, that bring them to seek care.

Host Amber Smith: Once someone is diagnosed with ADHD as an adult, how is it typically treated?

Stephen Faraone, PhD: Well, the treatments that work for children with ADHD all work for adults with ADHD, at least when talking about the medications. Psychosocial treatments are a little different.

So for adults, with ADHD, they would typically follow the usual treatment paradigm. Typically prescribers will start with one of the two stimulant medications. These are amphetamine, popularly known as Adderall, or methylphenidate, popularly known as Ritalin.

I typically will start with one of those. And if those don't work, we'll move on to a nonstimulant medication. Then, these two classes have different mechanisms of action, different features. The stimulants tend to work better, which is why they tend to be prescribed first, but they also have a greater risk for diversion and misuse. And because of that, they're controlled by the FDA and the drug enforcement agency. And for that reason, some prescribers prefer to start with nonstimulant medications

Host Amber Smith: Is the treatment generally considered effective? And does it last?

Stephen Faraone, PhD: This now has been documented in very good statistical studies, of many, many, many studies, not one simple study. So there's no question that these medications are highly effective and have only relatively mild side effects, which are easy to manage.

In fact, when we look at the magnitude of effect of these medicines, on a statistical scale that we can use to compare different disorders, the medicines that treat ADHD are more effective than just about any other medicine used in any other area of medicine. So they're more effective than antihypertensive medications, more attentive than, drugs that lower cholesterol -- across the board. These are highly effective medications.

You asked if they last. They will last, if the patient takes them. They're not a cure. They don't cure the disorder, so one has to continue to take the medication, just as a person with diabetes needs to take their insulin, if their diabetes will be under control.

Host Amber Smith: So this would be a chronic medication.

Stephen Faraone, PhD: It's typically a chronic medication. We do know that throughout life, there is this age-related diminuation in symptoms of ADHD. And what that means is that over time, some people with ADHD will start to have fewer and fewer symptoms and won't require treatment.

And so, periodically, it would not be unusual for a prescriber to suggest that the person stop taking their medication for a while to see if the symptoms re-emerge, and if they don't re-emerge, that's great. They don't need medication anymore. But in most cases, the medication will be continued.

But actually the biggest problem we have in treating ADHD, whether it's in children or adults, Is adhering to the medication.

Actually, this is true across medicine. Adherence is actually very poor in medication. And so one of the most important things that prescribers can do, who prescribe medications for ADHD, is to do anything they can to improve the patient's adherence to the medication.

Host Amber Smith: Has the prevalence of cellphones impacted adult attention spans, or has it had any impact on ADHD?

Stephen Faraone, PhD: No, it has not. There are absolutely no data to suggest that cellphone technology has somehow increased the prevalence of ADHD. It's one of these strange things that happens on the internet, is that somebody has an idea that some technology is causing ADHD, and I think back in the day they said televisions caused ADHD. Now it's cellphones or computers.

ADHD has been in the population for as long as we have recorded information in medicine. The first mention of symptoms of ADHD in the medical literature occurred in about 1775 in a German textbook, soon followed by a similar mention in a Scottish textbook. They didn't have cellphones, they didn't have TVs, but they had ADHD by a different name.

So no these technologies aren't causing ADHD. They can be sources of distraction, which cause problems to people with ADHD. But there are lots of sources of distraction, evenfor people without cellphones.

Host Amber Smith: Is there anything that makes a person prone to ADHD, or is there any way to prevent the development of ADHD?

Stephen Faraone, PhD: Well, that's certainly a goal of, current and ongoing research. We do know that, the person's genomic background can predispose them to have ADHD, but it's neither necessary nor sufficient to cause ADHD.

We know that there are many early in life, particularly environmental, risk factors to the fetus, for example, having pregnancy complications that cut off oxygen to the brain, being exposed to pesticides or other chemicals early in life, can modify the brain in unknown ways, as of yet, to produce ADHD.

And then living in very stressful environments with lots of family conflict, lots of difficulty, can cause ADHD.

But I want to do want to emphasize to the public that there is no one cause of ADHD. It's not like, "Oh, I have a horrible mom. She caused my ADHD." No.

From 99.9% of cases, the disorder is caused by the accumulation of many small risks that in the end affect the brain and lead to ADHD symptoms. In only very rare cases do either very adverse environments or one very deleterious gene cause ADHD. But those, by definition, are very rare.

Host Amber Smith: If an adult with ADHD wants to have a child, and they're concerned about having a child who develops ADHD, what would you say to that adult?

Stephen Faraone, PhD: I would say to that adult that, most people with ADHD especially if treated, can live happy and productive lives. And I would have no concern about a person with ADHD having a child. Also, the risk to the children is real. It's in the realm of, say, 25% to 50%, but it's not necessary. And the fact that, you know, your child's at risk means that if they were to develop ADHD, you could get them to treatment early and early treatment is actually more important than treatment in general, because most people come (for treatment) after they've had ADHD for many years, and that complicates the treatment for the disorder and can lead to worse outcomes.

Host Amber Smith: So it's by no means a sure thing that you would have a child with ADHD just because you have it.

Stephen Faraone, PhD: It's not a sure thing. And as I said, not something that would be a reason not to have children.

Host Amber Smith: And if you're an adult who had a parent who had ADHD, just being aware of that, is there anything that you can do to make sure you don't go down that road?

Stephen Faraone, PhD: In those cases you might recognize in that parent that they had problems with parenting that were not beneficial to you as a child, and may have been harmful. And we do know that adults with ADHD, tend to have more difficulties in parenting than adults who don't have ADHD. And so that's really the biggest concern with an adult who has ADHD as a parent, is that they're able to parent appropriately.

And if their child has ADHD, for example, the parent has to remember to give the child their medication in the morning. And if they can't remember, or they're too disorganized because of their ADHD, they won't be able to supply that support for their ADHD treatment, but also for other types of issues in parenting.

Host Amber Smith: Where can people go to get information about ADHD?

Stephen Faraone, PhD: Well, I've created a website called ADHDevidence.org, which provides curated, evidence-based information about ADHD in both children and adults. So please go there. You can also follow my ADHD tweets on @StephenFaraone on Twitter.

Host Amber Smith: The experts on this committee will be coming up with guidelines for diagnosis and treatment. Currently, is ADHD diagnosed and treated differently in different regions of the U.S. and in different countries?

Stephen Faraone, PhD: There are some differences across countries, partly because not all countries have the same medications available for ADHD. In the United States, we have almost every medication there is. European countries and other countries have a limited selection because their drug approval agencies have different approaches. Overall, the diagnostic method is essentially the same. The variability is not so much between countries as it is, between individuals based upon their level of education.

I can give you a great example of that. To prepare for the guidelines process, the American Professional Society of ADHD and Related Disorders, known as APSARD, conducted a research study aimed at looking at levels of quality care practices in primary care across the United States.

I actually headed up this project, and we've published our first paper, which describes what we call quality metrics. These are metrics of quality care. And we recently completed our study of about 70,000 people with ADHD across the United States. And what we found is some good news and some bad news.

The good news was that over the period from 2010 to 2020, that's a decade, there has been a steady increase in the levels of quality care in these practices across the United States. So that's good news. Quality care for adult ADHD has been improving.

The bad news was that there were still several areas of quality care, and we only assessed 10. So we're looking at only 10 areas of quality care. There were several areas of quality care where we had not seen improvement over the 10 years, or the improvement remained very low, meaning, only 20% to 30% of patients were getting this level of care that they should get.

And it was partly because of these results that prompted us to think we need to really develop clear guidelines for not just these 10 areas that we tested in this pilot study, but in all areas of ADHD care for adults.

Host Amber Smith: Do guidelines for children already exist?

Stephen Faraone, PhD: Guidelines do exist. The American Academy of Pediatrics has a set of guidelines and the American Academy of Child and Adolescent Psychiatry also has a set of guidelines.

Host Amber Smith: If you come up with the guidelines for adults, how is that going to standardize care? Or is that the goal, to standardize and bring the quality level the same across the country?

Stephen Faraone, PhD: The goal is that it will, to some degree standardize care because health care professionals can look towards a document that was prepared by the only professional association for ADHD in the United States, which, by the way, is an association which involves many types of health care professionals, many of whom have decades of research and clinical expertise in ADHD. They'll see a document produced by a committee of people with extensive experience in adult ADHD. And so when they make decisions about how to treat their patient, the average doctor no longer has to think, "How do I decide what to do?" They can actually look to a document that provides them clear guidance on what is quality care.

Host Amber Smith: So, the doctors would still have autonomy to do what they think is right for their patient, but these guidelines would be (available).

Stephen Faraone, PhD: Absolutely. There are many guidelines in medicine and all of these guidelines are simply guideposts, really, for doctors to think, "Am I doing what I'm supposed to do, according to the experts? And then, if I'm not, I ought to have a very good reason why I'm not doing it."

And if they have a very good reason, they should, by all means, go in a different direction because we have to keep in mind that there's no such thing as an average patient. Patients have a lot of variability in their clinical presentations and what prescribers and health professionals need to do for them. And in individual cases, one may need to deviate from guidelines and that's perfectly OK.

Host Amber Smith: Do you think when you finish with the guidelines, are these going to be instructions for physicians across the country to give treatment to people so that they'll be able to maintain a job and normal everyday functions and relationships? Is the goal to make things better for people who have ADHD?

Stephen Faraone, PhD: Absolutely. That's exactly the goal. The goal is to reduce the burden of symptoms and the burden of life impairments of people with ADHD and their families and their loved ones, as well. I should emphasize, you mentioned physicians, but these guidelines will be used by physicians, they'll be used by nurse practitioners, who do a lot of prescribing in psychiatry these days. They'll be used by physician's assistants. They'll be used by psychologists and other mental health care professionals, because our guidelines will not just cover, the use of medicines, but we'll talk about other, nonpharmacologic treatments that may be useful in adult ADHD and if, and when, how they should be implemented.

Host Amber Smith: So, in addition to medications, there's going to be some other guidelines.

Stephen Faraone, PhD: That's correct.

Host Amber Smith: I understand that you and some colleagues published an international consensus statement about ADHD. Why was that done?

Stephen Faraone, PhD: We decided this was necessary to correct misconceptions about ADHD that stigmatize people with the disorder, reduce the credibility of their caregivers and limit access to treatment. I should emphasize that this statement is not a set of opinions by me or other people. What I did as president of the world Federation of ADHD was to convene a steering committee of of ADHD associations from around the world, asked them to recommend expert authors for the consensus statement. We came up with a total of 80 authors from 27 countries and six continents -- we couldn't find anybody in Antarctica -- and these authors, put together a consensus statement that essentially curates and presents those facts about ADHD that we can be most certain about based upon there being many, many, many studies or some very outstanding, large-scale studies.

Host Amber Smith: And because of this, anybody interested in knowing what's the best evidence about ADHD can read the consensus statement. It's very simple to read. There's a good table of contents. Go to adhdevidence.org/ics, and you will find it there. Well, I appreciate you making time for this interview and making time to tell us about this, Dr. Faraone.

Stephen Faraone, PhD: Happy to do it. Thanks for having me here. Appreciate it.

Host Amber Smith: My guest has been Dr. Stephen Faraone. He's a distinguished professor of psychiatry and behavioral science and neuroscience and physiology at Upstate and also the president of the World federation of ADHD. "The Informed Patient" is a podcast covering health, science and medicine, brought to you by Upstate Medical University in Syracuse, New York, and produced by Jim Howe. Find our archive of previous episodes at upstate.edu/informed. This is your host Amber Smith thanking you for listening.