Treating multiple sclerosis; ADHD in adults; CPAP alternatives: Upstate Medical University's HealthLink on Air for Sunday, Oct. 2, 2022
Neurologist Kim Laxton, MD, tells about comprehensive care for patients with multiple sclerosis. Psychologist and researcher Stephen Faraone, PhD, talks about diagnosing and treating attention-deficit/hyperactivity disorder in adults. Pulmonologist and sleep specialist Dragos Manta, MD, discusses alternatives to CPAP (breathing-assistance) machines for people with sleep apnea.
Host Amber Smith: Coming up next on Upstate's "HealthLink on Air": a neurologist talks about what's important to know if you're newly diagnosed with multiple sclerosis.
Kim Laxton, MD: ... Everyone's experience is going to be different with MS, and these losses themselves can be temporary. They can be intermittent or can be long-lasting. But our goal is to halt overall the breakdown of this myelin, and that's where we go into the treatments. ...
Host Amber Smith: And a professor discusses diagnosis and treatment of ADHD in adults.
Stephen Faraone, PhD: ... 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: All that, some potential CPAP alternatives for people with sleep apnea, and a visit from The Healing Muse, coming up after the news.
This is Upstate Medical University's "HealthLink on Air," your chance to explore health, science and medicine with the experts from Central New York's only academic medical center. I'm your host, Amber Smith.
On this week's show, we'll meet an upstate medical university professor who was selected to help assemble guidelines for the diagnosis and treatment of adult attention-deficit/hyperactivity disorder.
But first, a neurologist goes over issues of importance to people with multiple sclerosis.
From Upstate Medical University in Syracuse, New York, I'm Amber Smith. This is "HealthLink on Air."
Upstate Medical University now offers a comprehensive MS clinic for patients with multiple sclerosis, which is estimated to affect more than a million Americans.
Here to tell us more about it is Dr. Kim Laxton. She's an assistant professor of neurology at Upstate who cares for patients who have multiple sclerosis. Welcome to "HealthLink on Air," Dr. Laxton.
Kim Laxton, MD: Hi, thank you for having me.
Host Amber Smith: I'm anxious to hear how the comprehensive MS clinic works. Can you walk us through what a new patient might experience?
Kim Laxton, MD: We take patients at every step of their MS journey. some come to us with a pre-established diagnosis, and others are experiencing symptoms for the first time and are searching for an answer. So the first appointment, you might be meeting with myself or a colleague like Dr. Corey McGraw, Upstate's fellowship-trained MS neurologists, and our goal at the first appointment really is just to get to know you, the symptoms you've been experiencing, review testing you've completed, perform physical exams to detect possible signs of damage from MS lesions, like looking at your reflexes or your strength, how you're feeling sensations, and your vision.
If we're starting at the very beginning of someone's MS journey, we're really putting together a puzzle, trying to gather all those evidence pieces to look for a diagnosis or to rule one out. So we may need to fill in pieces of that puzzle after meeting you, which can can include lab work, which we can obtain on the very first day of your visit, MRIs (a type of scan), to look at different aspects of the brain and spine, or to set up other procedures to help us figure out what's been going on.
Host Amber Smith: So there could be some testing, some medical imaging, you said the MRI, maybe some blood work and other things that help you arrive at a diagnosis.
But if I understand you correctly, some of your patients who come here for the first time, they may hear the words "multiple sclerosis" for the first time in your office.
So how do you typically describe what the disease is to someone who's newly diagnosed?
Kim Laxton, MD: Exactly. So multiple sclerosis itself, it's a chronic, ongoing and complex disease, where your body's own immune system mistakenly attacks itself. So this whole process is known as an autoimmune response. With MS, the immune system attacks and damages fatty material, which is known as myelin, that insulates the nerves of the central nervous system. And the central nervous system consists of your brain, your spinal cord and your optic nerves, or the nerves that go from the brain to your eyeballs.
The damage to the myelin is known as demyelination, and this causes inflammation and scarring. So multiple sclerosis itself means many scars, and these are the scars that they're referring to. Healthy myelin, this fatty covering, acts similar to a covering on an electrical cord. It protects the nerves and allows them to transmit impulses or messages quickly and effectively.
And when there's scars that are happening, you might also hear us call them plaques or lesions, they affect the nerves' innate ability to transmit these messages between the brain and other parts of the body. So this interruption of communication causes unpredictable symptoms that we see in MS, such as the numbness, tingling, weakness, memory problems, vision loss, even fatigue.
Everyone's experience is going to be different with MS, and these losses themselves can be temporary. They can be intermittent or can be long-lasting. But our goal is to halt overall the breakdown of this myelin, and that's where we go into the treatments.
Host Amber Smith: Do we understand what causes multiple sclerosis? This is an autoimmune disorder, you said, but what makes it happen?
Kim Laxton, MD: We don't have an exact kind of cause for MS, but we do know the players that are involved in the game. It's caused by the immune system, which mistakenly attacks the brain and nerves. The components of this immune system include two really important cell lines.
You have your T cells and your B cells. So, T cells, they get activated in the drainage system of your body called the lymphatic system. And in MS, they enter into the blood, into the CNS (central nervous system), the brain and the spinal cord, things like that. And once there, they release a bunch of chemicals that cause inflammation and damage to the myelin and the cells that help make the myelin.
Normally you have other cells that help dampen this response, other T regulatory cells, but this is downregulated, or doesn't work as well, in patients with MS. T cells also go on to affect other cells, like B cells. So I mentioned two cells, B and T cells. These B cells normally help produce antibodies and stimulate other proteins.
And these also go haywire in MS and contribute to the problem. So, it's not clear why this happens, but it seems to be a combination of triggering this, and then other factors, as well, which can be environmental or genetic, things along those lines.
Host Amber Smith: You mentioned genetic. Is it hereditary? If a relative of mine had the disease, does that mean I may be more prone to it?
Kim Laxton, MD: MS is not an inherited disease, meaning it's not a disease passed down from one generation to another. However, there is a genetic risk that can be inherited. So, example, in the general population, let's say the risk for developing MS is about one in a thousand or so. In twin studies, that risk can be elevated to as much to one in four.
And the risk of developing MS in a first-degree relative that has MS, so like a parent, a sibling or a child, it's far less than identical twins, but more than the general public. So there definitely is a contributing factor there.
Host Amber Smith: Well, Dr. Laxton, is it true that you have a personal connection to this disease?
Kim Laxton, MD: Yes, very much so. My mom was diagnosed with MS when I was a young girl, and like many of our patients, she was scared and confused when she started developing these symptoms, since they're very disparate at times and unexplainable. I had accompanied her to many of her doctor appointments and really appreciated how the neurologist took what felt like chaos and distilled it into a diagnosis.
Back in those days, there were a lot less treatment options, a lot less known about the conditions. So having that support with her was really appreciated. I think living through all those stages not only inspired me to help others through this process but gave me insights into aspects of the MS journey that not maybe all physicians have. and I really see how important family and friend support can be through all this time.
Host Amber Smith: Is that why you decided to become a doctor? And is that why you chose this particular specialty?
Kim Laxton, MD: It's definitely a lot of what drove me to continue practicing. The journey to becoming a doctor is a really long one. And that in the background really helped inspire and drive me through all those years.
Host Amber Smith: I know you were young when this was happening, but how did your mom find out that she had multiple sclerosis?
Kim Laxton, MD: The first symptom she had was numbness that occurred one night. It was Halloween. We were out walking for a really long time and she started developing numbness on the left side of her body. She didn't know where it came from. And like many of our patients, she was hoping she'd go to bed and it would get better the next day. And unfortunately, that didn't happen, and after prompting from family and friends, eventually reached out to her family doctor, who would sent her to a neurologist, where the diagnosis was made.
Host Amber Smith: This is Upstate's "HealthLink on Air," with your host, Amber Smith. I'm talking with Dr. Kim Laxton. She's an assistant professor of neurology at Upstate, and she cares for a lot of patients who have multiple sclerosis, or MS.
I wanted to talk with you about how people typically learn they have MS. Before the break, you mentioned that your mother had numbness and tingling, and that's a typical way that it comes to people's knowledge, but what age are they usually when this happens?
Kim Laxton, MD: So, there's not necessarily a typical age or a typical patient that can have MS. It can happen to anyone, but we do seem to find that it affects younger patients, in their 20s and 30s, and classically women.
Host Amber Smith: And the typical symptom is numbness and tingling.
Kim Laxton, MD: So, the events leading up to the diagnosis are unique in each person. but they can include things like numbness, tingling, weakness, vision loss or balance concerns. Those are the more common presentations.
Host Amber Smith: So, vision loss -- this person may end up at an ophthalmologist's office before they come to see you, right?
Kim Laxton, MD: Exactly. So a lot of our referrals come from either primary care providers or ophthalmologists with patients coming in with sudden-onset vision loss, or even insidious darkening of their vision, typically in one eye.
Host Amber Smith: Does multiple sclerosis get mistaken for other diseases?
Kim Laxton, MD: It definitely can. These symptoms can be seemingly random to certain providers. They can come and go, and they can be mistaken quite often for things like headache disorders or different pain disorders, ruling out compression neuropathies.
So when a nerve can get caught, I think most people might think of carpal tunnel, things like that, can lead to numbness and in a younger patient population that might be something someone might easily think of or might want to rule out first.
Host Amber Smith: What sort of an outlook would you give to someone who's newly diagnosed today?
Kim Laxton, MD: I would say medicine has come a long way since the early 1990s, that was back when we only had a handful of treatments available. they were mainly injections,the interferons, glatiramer acetate. These are type of medications that we really only had when we first started. It was not uncommon, unfortunately, to see MS patients in wheelchairs as their disease progressed.
However, now we have over 17 different treatments that range from those injections to oral medications and infusions. The field is constantly growing and we're learning more and more about MS every day. So while we don't have a cure, we do have many more resources than we did in the past. And while it is a chronic condition that is going be with you your whole life, your MS team is also there with you that whole way.
Host Amber Smith: Why is it that MS in one person can be so different from what the disease is like in another person?
Kim Laxton, MD: Demyelination can occur anywhere in the central nervous system.
And for this reason, everyone's experience with MS is unique. One individual may have a lesion that is affecting, let's say, the sensory aspect on one side of their body. And another one might have a part of the brain that controls motor strength. So everyone can present with different symptoms, and not everyone can have the same types of symptoms.
To add to that, there are different types of MS, and each one of these has different ways that the disease can progress or change throughout the person's life. You have relapsing forms, which are the most common, where you have discrete periods of time where you'll have new symptoms, and then those symptoms can disappear or slightly linger. That's a relapsing remitting course. So you have symptoms, they may go away, and you have periods of time where you may not have symptoms.
Other patients have progressive forms, and these entail where you have a condition or a symptom that comes on, and it can progressively and continually worsen from when the initial attack comes on. And that's more rare, maybe about 10% of the population, but that happens as well.
So there's a wide spectrum of symptoms you can have, but not only that, but also the course that the disease can take.
Host Amber Smith: So, it sounds like there's not a typical course that everyone follows, but are there symptoms or experiences that are universal among people with MS?
Kim Laxton, MD: Not really. One person may only have one symptom their entire course of MS. They may only have one attack, and that's the only symptom they may have. And that's not necessarily universal from every single person. So each case of MS is unique in that way.
Host Amber Smith: Does having MS increase a person's risk for other neurological diseases or medical conditions?
Kim Laxton, MD: Since multiple sclerosis is an autoimmune condition, we do see some overlap in other autoimmune diseases in some of our patients. Those things can include things like diabetes, thyroid disease or inflammatory bowel disease, so other autoimmune conditions can come together, they flock together.
But we also see other coexisting medical conditions. There's an increased risk of cardiovascular disease that we've found with MS patients. So it's even more important to abstain from things like smoking, or to quit as early as you can, working with your primary care to manage blood pressure and cholesterol, and strive for overall healthy eating habits and exercise. Which are good for MS, but also lowering your risk for associated cardiovascular diseases.
Host Amber Smith: Without a cure for MS, what does the comprehensive MS clinic offer in terms of care? How do you take care of these patients?
Kim Laxton, MD: As part of comprehensive care, we're going to help establish other ways to go through your journey with MS than just the disease itself.
So is there things like coping and adapting to MS and other things that it can bring about? You have, comorbidities or other things that you can experience with MS, such as mood changes, feeling of fatigue, and these things can really kind of affect the relationships that you're having outside of your day-to-day life, your day-to- day work environment, how you can perform at work, and we're kind of working together with you to see what we can do to get you back and, working at the best that you can out there in the world. Studies show that a shared decision-making and shared working-around with patients really do improve overall outcomes in patients.
So we want to be there through all the steps, whether it's the medical care, whether managing your symptoms, but also the psychosocial aspects of outside of the hospital.
Host Amber Smith: It sounds like there could be some mental health component to this as well.
Kim Laxton, MD: Exactly.
Host Amber Smith: You've mentioned that this is an autoimmune disease. Do you use the medications that doctors use to treat other autoimmune disorders? Or do you have some that are specifically for MS patients?
Kim Laxton, MD: There are a few that do overlap with other autoimmune conditions, but these were ones that were typically used before we found specific treatments that target the underlying mechanisms for MS a little bit more specifically. Back in the day, things like Rituxan was used, because it had a broader effect, and while it's still used today, we favor more specific treatments when we have more evidence to say that this is multiple sclerosis. So these treatments aim to prevent new central nervous system lesions from forming and help minimize the number of relapses, reducing overall inflammation, and preventing formation of new lesions. So, as I mentioned back earlier with those B cells and T cells, a lot of, these new therapies kind of work on those cell populations to modulate them or reduce their ability to attack ourselves so vehemently.
Host Amber Smith: So the demyelination that has happened, that cannot be reversed?
Kim Laxton, MD: Correct.
Once the myelin has been damaged and leaves that scar, that area is not going to regenerate itself, but our brain finds other pathways at times to get around that area of inflammation. And sometimes that scar is not complete, so there might still be ways for that signal to get through.
But as I mentioned, once you affect that covering of the nerve, or the covering of an electrical wire, that signal might be patchy or doesn't work as well.
Host Amber Smith: How do you deal with patients who have related issues, such as vertigo or bowel or bladder problems or mobility? Do you have referrals?
Kim Laxton, MD: Yes, definitely. Not only are there certain treatments, medications that can help with some of these problems, but we work really closely with other ancillary services, like physical therapy, occupational therapy and vestibular therapies that can work with the individual, notice where they're struggling or what particular concerns they may have, and work with them to strengthen what they have and reinforce any pathways that we can to get them back to as close to baseline as we can.
Host Amber Smith: Do you anticipate that patients may have the opportunity to participate in clinical trials as new experimental treatments are developed?
Kim Laxton, MD: Yes, definitely.
We currently have a few clinical trials that we're working with, so we are actively looking to enroll and educate patients when they are available. They're not necessarily for every population of patients with MS, so please don't get frustrated if you're really interested in looking for a clinical trial. You might not just fit the picture of that trial, but we're always looking to enroll new patients and work with new trials, so keep asking, and we'll keep trying to work with you if it's something that you're looking forward to or interested in.
Host Amber Smith: Does the MS clinic offer any sort of support groups or counseling for groups of people, to bring MS patients together?
Kim Laxton, MD: Yes, we work with the MS Society, and they have local chapters in different areas that work with reaching out to patients and support forming these support groups. So we have resources that we can give to connect patients with local groups or even national groups, depending on what they're looking for, for that support.
Host Amber Smith: Let me ask you, because you shared that your mother has MS, , have you learned anything that could help your patients, being a daughter of someone who has this disease? Does that inform your caregiving with your patients?
Kim Laxton, MD: Yes, definitely. I think an important thing that maybe we don't all recognize is that patients with MS may not look like they're sick, may not look like they're going through anything. A lot of patients we see would look just like you or I. But underneath that, they may have struggles from a day-to-day basis that they not always present or that they're good at covering up, but it's still there.
So, being aware of certain situations or being aware that they may not be able to keep up with everything that you're going through is important, believing when they're saying they're going through something, even though they might not look like what we would say is sick. I think that's a common complaint that a lot of patients experience with family and friends, that they don't understand, or they don't know that they can't go outside when it's really hot, or it's certain things are struggles for them. It's just being open and listening and taking what they're saying as what they're experiencing. Because it can be tricky sometimes to really piece out what's going on.
Host Amber Smith: So there's, it sounds like, some invisibility with this disease.
Kim Laxton, MD: Uh-huh. Exactly.
Host Amber Smith: Are there good days and bad days? In other words, if someone is feeling good one day and then they're not the next, that's normal, right?
Kim Laxton, MD: Exactly. And that's another one of these classic things with MS, is that, the body doesn't like heat a lot of the times with multiple sclerosis.
Again, going back to that electrical analogy that when it's hot outside the electricity and those firings, they're not as efficient, they don't work as well. So not only do we have a broken wire, now we have one that's put into a situation where it's not going to work at its maximum, even then. So a lot of times patients who might normally not have any symptoms, or maybe they had a symptom way back then of some numbness and tingling, as an example, it gets hot out, and they might have that symptom come back. It's not new inflammation or new disease activity necessarily, but it's just that wire really telling them that, "Hey, I'm not liking this right now. It's not working so well." So they can definitely have good days and bad days. And not only heat, but stress, fatigue, having any other sickness going on, like a UTI, a urinary tract infection, having a cold, COVID, all of those things can make the body not work at its prime or its optimum and lead to more symptoms that they might experience.
Host Amber Smith: Well, now that you have the medical knowledge about this disease as well, what's your outlook in terms of, do you think will have a cure for this in your lifetime?
Kim Laxton, MD: It's something where Idefinitely am looking for that to be hopeful, but since we still don't necessarily pinpoint one exact cause, we find a lot of contributing factors to MS. We find that there's lots of things that increase the risk in kind of a chain-of-events list of things that have to happen to get MS. Since we can't really pinpoint one thing, it's hard to Imagine a cure right now for something that has a lot of disparate possible contributing factors to the disease. So while I'm really optimistic, I think that we're going to have to have a lot more study of looking to see where all these disparate things might connect, to work for that cure.
But we're going to keep trying. That's definitely something I can say from the medical point of view, that people will continue to look until we find something.
Host Amber Smith: Well, Dr. Laxton, I really appreciate you making time to tell us about the comprehensive MS clinic.
Kim Laxton, MD: Well, thank you so much for having me.
Host Amber Smith: My guest has been Dr. Kim Laxton. She's an assistant professor of neurology at Upstate, and she specializes in multiple sclerosis. I'm Amber Smith for Upstate's "HealthLink on Air."
How ADHD is diagnosed and treated in adults, next on Upstate's "HealthLink on Air."
From Upstate Medical University in Syracuse, New York, I'm Amber Smith. This is "HealthLink on Air."
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 "HealthLink on Air," Dr. Faraone.
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: 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 intensive than other 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: Upstate's "HealthLink on Air" has to take a short break, but we'll be back soon with more about adult ADHD.
Welcome back to Upstate's "HealthLink on Air," with 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.
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: 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 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: 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: 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.
Host Amber Smith: What did the statement say?
Stephen Faraone, PhD: 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 leaders 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.
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.
Host Amber Smith: 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.
I'm Amber Smith for Upstate's "HealthLink on Air."
Here's some expert advice from sleep specialist Dr. Dragos Manta, from Upstate Medical University. Is there an alternative to the sleep apnea machines called CPAP?
Dragos Manta, MD: Continuous positive airway pressure -- it's a device that maintains a certain pressure into the airway to prevent the airway collapse that is the main problem that happens with sleep apnea. There are alternatives, but the CPAP machine is still the best treatment for sleep apnea. And I have to tell you that I've been thinking of so many patients that came to me and they said, "No, I don't think I can use that." You'd be surprised how many patients that initially wouldn't even consider it. Now they feel so much better, and they swear by it. So it's definitely something that initially sounds like and looks a little bit more difficult, but it is the gold standard treatment. And I would be very reluctant to go to a second line, because all the other lines of treatment are really, I wouldn't even call them second line. I would say maybe third or fourth line of treatment. Some patients -- a lot of patients feel better -- but some patients cannot tolerate, and in that situation, we do have other options. The most popular one would be an on oral appliance, which is a device that a dentist will make that the patients will have to sleep with at night. It's effective, although a little less effective and mostly effective in maybe mild to moderate cases of sleep apnea.
Host Amber Smith: You've been listening to Dr. Dragos Manta from Upstate Medical University.
And now, Deirdre Neilen, editor of Upstate's literary and visual arts journal, The Healing Muse, with this week's selection.
Deirdre Neilen, PhD: Marilyn McVicker has published several books of poetry and nonfiction. The poem she sent us deftlyseparates good doctors from poor doctors. She reminds patients to speak up and not settle for less than a caring professional. Here is "Doctors":
I breathe, review my notes,
while the clock ticks the minutes,
weeks, years of illness, decanted
into a 20-minute appointment.
I have driven so many miles.
Will she listen?
Will she walk in with a smile?
I have had so many doctors wear
their impertinence like stethoscopes.
"Well, you certainly don't look sick."
"Your diagnosis is too complicated."
"There's nothing I can do to help you."
This poem is not for all those smirking
frenzied physicians, who push judgment
and peddle fear.
This poem is for the doctor who pulled up
a chair, made eye contact, listened. This poem
is for the doctor who ventured from behind
the computer, listened, asked intelligent questions.
This poem is for the doctor who did not
reflexively grab the prescription pad,
realized I needed medical care, admitted
he couldn't help, found someone who could.
This poem is for the doctor who worked
to find the right diagnosis, taught me to give
my own injections, started home infusions,
called each week to check in.
This poem is for the doctor who understood
his partnership was more important than healing
that would never come.
Host Amber Smith: This has been Upstate's "HealthLink on Air," brought to you each week by Upstate Medical University in Syracuse, New York. Next week on "HealthLink on Air," a doctor who runs offers running advice, and how to choose an over-the-counter hearing aid. If you missed any of today's show, or for more information on a variety of health, science and medical topics, visit our website at healthlinkonair.org. Upstate's "HealthLink on Air" is produced by Jim Howe, with sound engineering by Stephen Shaw. This is your host, Amber Smith, thanking you for listening.