PROCEEDINGS OF A WORKSHOP | June 2024

Adult Attention-Deficit/Hyperactivity Disorder

Diagnosis, Treatment, and Implications for Drug Development

Introduction

The National Academies of Sciences, Engineering, and Medicine’s Forum on Drug Discovery, Development, and Translation and Forum on Neuroscience and Nervous System Disorders hosted a public workshop in December 2023. The workshop convened professionals who typically diagnose attention-deficit/hyperactivity disorder (ADHD), drug developers, researchers, people with lived experience, and other participants to discuss the diagnosis and treatment of adults with ADHD, explore the challenges and opportunities for drug development, and consider strategies for assessing the risks and benefits of ADHD medication treatment in adult populations. The workshop was supported, in part, through a grant (PAR-23-072) from the Center for Drug Evaluation and Research at the U.S. Food and Drug Administration (FDA).

Statements and opinions expressed are those of individual workshop presenters and participants.1

  • Craig Surman

    PLAY VIDEO

    “ADHD leaves a trail of challenges far beyond individuals themselves, in families, educational settings, in the workplace, and really poignantly … in the criminal legal system.”

    Craig Surman
    Director, Clinical and Research Program in Adult ADHD, Massachusetts General Hospital; Associate Professor of Psychiatry, Harvard Medical School

  • Rob Califf

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    “It is tremendously important that the medical community and patients find the right balance so that those who will benefit from treatment get it while avoiding exposure to medications and those who will not benefit.”

    Rob Califf
    Commissioner of Food and Drugs, FDA

  • Marta Sokolowska

    PLAY VIDEO

    “We emphasize the need to have evidence-based treatments, evidence-based adult ADHD clinical practice guidelines that hopefully will help to educate and facilitate understanding of both benefits and risks of the different treatments.”

    Marta Sokolowska
    Deputy Center Director, Substance Use and Behavioral Health, Center for Drug Evaluation and Research, FDA

Workshop Highlights

ADHD Diagnosis and Treatment in the United States

ADHD in adults is common, yet its diagnosis is complex. Many adults with ADHD have at least one comorbid psychiatric disorder such as depression, bipolar disorder, anxiety, and/or substance use disorder (SUD) complicating diagnosis. Further complicating the matter are providers’ concerns about patient misuse, risk of SUD, and Drug Enforcement Administration audits that could result in them losing their license. There is a need for clinicians to better understand and diagnose ADHD in adults, including improvements in diagnostic criteria and developing treatment algorithms. In the absence of guidelines and knowledge, treatment and patients suffer. (Califf, Childress, Green, Solanto)

KEY POINTS

  • ADHD among adults in the United States is a common mental health condition. It impairs social, academic, and occupational functioning. The burden of ADHD includes lower earnings, lower academic achievement, more car crashes, and an increased risk of death compared to unaffected peers. (Childress)
  • ADHD looks very different in adults than it does in children. Despite this, adult diagnostic tools still rely on symptoms that were written for children. (Higgins, Sibley)
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  • Napoleon Higgins

    “The issue with adults and the difficulty of diagnosing is that ADHD has a childhood face on it.”

    Napoleon Higgins
    President and Chief Executive Officer, Bay Pointe Behavioral Health

  • Ann Childress

    “ADHD is common. Diagnosis in adults is complex. You have to do a lot of work [to diagnose ADHD]. But once you get it treated, people get better.”

    Ann Childress
    President, Center for Psychiatry and Behavioral Medicine, Inc., President, APSARD

  • Margaret Sibley

    “Many of these folks are in this gray zone. They have elevated but not extreme ADHD symptoms. Clinicians do not know what to do with that.”

    Margaret Sibley
    Professor of Psychiatry and Behavioral Sciences, University of Washington School of Medicine

  • Kofi Obeng

    “Being able to take medication opened up a whole new world to me. And then also combining that with things like therapy, group work, behavioral modification, they became force multipliers for me in terms of just having a better life.”

    Kofi Obeng
    Executive Director, Attention Deficit Disorder Association [ADDA]

Impact of Misdiagnosis, Bias, and Stigma

ADHD is more challenging to diagnose in adults than in children as symptoms in adults are heterogeneous, many adults test false-positive on screening tests, and clinicians disagree on the threshold of symptoms needed for a diagnosis. Comorbidities, trauma, adversity, and substance use can also complicate the diagnosis of ADHD in adults. These misdiagnoses can exacerbate health inequities in historically marginalized communities and continue to impact access to resources both for adult patients and their providers. Bias and stigma around an ADHD diagnosis extends across racial, ethnic, and gender lines. Increasing awareness of adult ADHD and openly talking about it can serve to reduce stigma and bias associated with the disorder. (Cheyette, Goodman, Higgins, Obeng, Olfson, Walker, Weisenbach)

KEY POINTS

  • Underdiagnosis of ADHD in disadvantaged groups exacerbates health inequities. Access to appropriate ADHD diagnosis is subject to many biases related to race, gender, age, employment, and socioeconomic status.(El-Sabawi, Goodman, Gordon, Higgins, Mahome, Rosier, Schatz)
  • Clinicians who are not adequately trained to diagnose and treat ADHD in adults may lead to underdiagnosis and suboptimal treatment. (Goodman, Mahome, Olfson)
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  • Napoleon Higgins

    “I’ve never seen a White mom cry with a diagnosis [of ADHD], but I’ve seen Black mothers start to cry. They ask, what did I do wrong? My child is now lost; my beautiful son is now going to end up down this other path. What I have to explain to them clearly is that, no this is where we start getting help. This is how you navigate the system.”

    Napoleon Higgins
    President and Chief Executive Officer, Bay Pointe Behavioral Health

  • Tamara Rosier

    “The level of shame these professionals are carrying, trying to be normal. It is exhausting and we can do much better at treating this population.”

    Tamara Rosier
    Owner, ADHD Center of West Michigan; President, ADHD Coaches Organization

  • David Baker

    “We underestimate the degree to which stigma still exists with the diagnosis of ADHD, whether that’s childhood ADHD or adult ADHD.”

    David Baker
    Former Pharmaceutical Executive; Board Member, Edge Foundation

  • Carlos Blanco

    “For those living with ADHD, we want to eliminate stigma, increase access, and also encourage them to be advocates.”

    Carlos Blanco
    Director, Division of Epidemiology, Services, and Prevention Research, National Institute on Drug Abuse, National Institutes of Health

  • Evelyn Polk Green

    “The only way that we can stop stigma is for people to talk about it, stand up, and share their experience with others. It’s not an easy thing to do, but that is the only way that we’re going to overcome it.”

    Evelyn Polk Green
    Immediate Past President, ADDA; Past President, CHADD

Shared Decision-Making

Attention is needed on what is most relevant for adults with ADHD, including an awareness of how ADHD interacts with comorbid conditions and what medications, if any, are best suited for the patient. Using a shared decision-making approach, as is done with depression and other mental health issues, patients can work with their providers to figure out what treatment options are right for them. (Barron, Cheyette, Goodman, Higgins, Olfson, Walker, Weisenbach)

KEY POINTS

  • Given the multiple possible treatment options and the need for individualized assessment of risks and benefits, shared decision making is a good paradigm for treatment of ADHD in adults. (Olfson)
  • Social media contains both useful information and misinformation about ADHD that patients may turn to for medical advice. Providers can leverage these platforms and direct their patients toward reputable sources and destigmatize mental health. (Gold, Walker)
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  • Kylie Barron

    “[My doctor] spent probably like an hour and a half with me … by the end we were able to make a decision together…. I don’t think everyone needs to go see a retired research neurosurgeon but there’s a lot more that could be done.”

    Kylie Barron

  • Brandi Walker

    “Understand that people are dealing with their symptoms in various ways, and if they don’t have healthy coping strategies, they will use whatever they’ve been using to get by.”

    Brandi Walker
    Chief Executive Officer, Marie Pauline Consulting, LLC

  • Jessica Gold

    “We have to as providers … [validate] the experience that [patients] are seeing and learning from social media, understand where that’s coming from … but also provide that information they’re not getting from social media.”

    Jessica Gold
    Associate Professor, Department of Psychiatry, University of Tennessee Health and Science Center; Chief Wellness Officer, University of Tennessee System

  • Andrea Chronis-Tuscano

    “Ideally providers and parents could engage in shared decision making regarding whether to begin treatment with stimulants, CBT (cognitive behavioral therapy), organizational skills, or nonstimulants. But limited mental health literacy may make this challenging in some cases.”

    Andrea Chronis-Tuscano
    Joel and Kim Feller Professor of Psychology, Director of the University of Maryland ADHD Program, University of Maryland, College Park

  • Sunny Patel

    “Trusted messengers are really the key … the last-mile problem of how do you reach individuals, it’s not going to be [solved just] through a 20-page document, it’s going to be trusted messengers, and often trusted messengers are individuals with lived experience, people who are proximate.”

    Sunny Patel
    Senior Advisor for Children, Youth and Families, Substance Abuse and Mental Health Services Administration [SAMHSA]

  • Evelyn Polk Green

    “Adults with ADHD have to be empowered and given the respect and opportunity to partner and participate in their own treatment, or it will never be successful.”

    Evelyn Polk Green
    Immediate Past President, ADDA; Past President, CHADD

  • Latasha Seliby Perkins

    “As an African-American woman who’s a descendant of slaves, there are some real things that this medical system has done to my people which makes them very, very mistrusting. And so, to build that trust we have to have conversations to answer questions, and then they can educate me about what’s holding them back.”

    Latasha Seliby Perkins
    Assistant Professor of Medicine, Georgetown University School of Medicine

Risks and Benefits of Adult ADHD Treatment

Receiving the appropriate diagnosis and treatment for adult ADHD can revitalize self-esteem, function, relationships, and bring a person to a state they never knew was possible. However, this all must be balanced with the tradeoffs that come with an ADHD diagnosis and its subsequent treatment. Following a diagnosis, one might experience stigmatization and shaming from those around them in both personal and professional settings. Additionally, taking some of the medications can impact one’s eligibility for insurance and certain jobs. While medication can help, other challenges associated with managing life require non-medication treatments, like cognitive behavioral therapy (CBT) and coaching. For many, receiving an official diagnosis and/or following a certain treatment option comes down to risk-benefit assessments. These assessments are different at the population level versus the individual level as individual risks and benefits may vary. (Barron, Gold, Goodman, Gordon, Mahome, Walker, Winterstein)

KEY POINTS

  • Medical treatment for adults living with ADHD confers psychological, social, academic, and occupational benefits while reducing the risk of other negative health and social outcomes, even premature death. (Goodman, Gordon, Mahome)
  • An official ADHD diagnosis can impact eligibility for insurance or certain occupations. Some of the medications offer contraindications and may also result in positive drug tests. (Goodman)
  • Medication alone is not enough to treat ADHD. Cognitive-behavioral interventions amplify healthy coping strategies. These are crucial to patient well-being as pills do not teach skills. (Barron, Gold, Olfson, Solanto, Walker)
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  • Duane Gordon

    “ADHD is much worse than you think…. Before diagnosis and medication I wrote off four cars and ran somebody over.… I want you to think about how stressful my life is unmedicated…. I’d rather [be managing the side effects of ADHD medication] … than going unmedicated with ADHD.”

    Duane Gordon
    President, ADDA

  • David Goodman

    “ADHD is the second most prevalent psychiatric disorder and [educational professional programs] don’t have a focus in professional training for this? How is that possible?”

    David Goodman
    Assistant Professor of Psychiatry and Behavioral Sciences, Johns Hopkins University

  • Patrick Kelly

    “The two most important things I do on a daily basis are stay sober and manage my ADHD. The way I do that is through medication, support groups, therapy, extensive personal education, and building a life around systems, habits, and routines that address those two things.”

    Patrick Kelly

  • Mary Solanto

    “Whereas stimulants enhance the core functions of attention and impulse control, CBT provides skills and strategies to more effectively deploy those functions, in the interest of improving time management, organization, and planning, which we know are often derailed for people with ADHD, with negative effects on educational and occupational functioning of both children and adults.”

    Mary Solanto
    Professor of Pediatrics and Psychiatry, Zucker School of Medicine at Hofstra-Northwell

Strategies and Implications for Drug Development

Bringing a new drug to market is expensive, time-consuming, and risky. However, there are multiple drug options for treating adult ADHD available now. Taken at clinically relevant doses, stimulants improve cognition in people with ADHD. Furthermore, current research into the effects of stimulants on the brain has suggested a strategy for identifying drugs that improve cognition while avoiding the abuse potential of stimulants. Yet, the insurance market drives providers to prescribe inexpensive generic stimulants. As a result, most ADHD drug research is focused on tweaking existing drugs rather than developing new drugs. There are also many types of non-stimulant drugs for ADHD. While these drugs work differently than stimulants, they have been shown to be more helpful for the self-regulation of attention. There is also a need to educate all providers on ADHD diagnosis and treatment options because many adults living with ADHD are initially diagnosed and treated by general practitioners and nurse practitioners. (Arnsten, Berridge, Farchione, Lietzan, Rubin)

KEY POINTS

  • Existing regulatory policy offers tools for reducing the risk of drug misuse, encouraging the development of new nonstimulant options, and nudging prescribers toward products with better safety profiles. (Arnsten, Lietzan, Rubin)
  • There are types of non-stimulant drugs for ADHD that work differently than stimulants and may be more helpful for the self-regulation of attention, behavior, and emotion. However, many practitioners are unaware of non-stimulant treatments. (Arnsten, Rubin)
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  • Amy Arnsten

    “I want to emphasize the importance of education…. Most medical [and nursing] schools … never even teach about the prefrontal cortex… Most practitioners [are] unable to understand the mechanisms behind [stimulant and non-stimulant] therapeutics, and many do not even know that nonstimulant [medications are an option offering] beneficial effects such as stabilization of attention and most importantly the ability to self-regulate attention, action, and emotion.”

    Amy Arnsten
    Albert E. Kent Professor of Neuroscience and Professor of Psychology, Yale School of Medicine

  • Erika Lietzan

    “There are more things that the government can do with funds available to it already in the manner of prescriber education to kind of nudge people in the right direction.”

    Erika Lietzan
    William H. Pittman Professor of Law and Timothy J. Heinsz Professor of Law, University of Missouri School of Law

  • Latasha Seliby Perkins

    “We need to treat [ADHD] like we treat depression … where there are so many different [drug] classes…. We’re going to have to do better with the medications that we have, the treatments we have, but also continue to look to better and newer treatments.”

    Latasha Seliby Perkins
    Assistant Professor of Medicine, Georgetown University School of Medicine

Public Health Considerations and Harm Reduction Strategies

ADHD is a public health issue. Allowing ADHD in adults to go untreated leads to lower earnings, lower academic achievement, impulsive and risky actions, and increased risk of numerous negative effects, including an increased risk of death. Taking a public health approach to addressing adult ADHD and centering on the lived experience of those with it, especially those who rely on stimulant medication, is important to better understand how to diagnose and treat adult ADHD. (Childress, El-Sabawi)

KEY POINTS

  • ADHD is a public health problem, not just an individual medical issue, and can be managed by screening widely, outlining steps for its management, and providing specialty care where needed. (Robinson)
  • Consider stimulant misuse and diversion against the backdrop of the illicit drug supply, which is volatile and dangerous. Seek strategies to curb misuse by limiting the harms caused by engagement with the illicit supply. Untreated ADHD can itself be a cause of SUD. (McNeil)
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  • Brooke Molina

    “Many people who misuse stimulants do so infrequently…. We’re not talking about a drug that becomes used on a daily basis. We’re talking about something that tends to be picked up during stressful times of academics.… Just because someone reports that they have done it doesn’t mean they are doing it on a very frequent basis.”

    Brooke Molina
    Professor of Psychiatry, Psychology, Pediatrics, Clinical & Translational Science, University of Pittsburgh

  • Ryan McNeil

    “We can’t consider [harm reduction strategies for ADHD medication use or SUD] without also considering the extreme barriers to care that people experience across the life course and how specifically these are shaped by structural racism, by classism, that can lead folks to not have diagnoses until much later in life, if ever.”

    Ryan McNeil
    Associate Professor, Director of Harm Reduction Research, Yale School of Medicine

  • Kofi Obeng

    “When individuals with ADHD can find their supportive community, it goes a long way as far as them being encouraged to own their ADHD and stick with treatment.”

    Kofi Obeng
    Executive Director, ADDA

Concluding Remarks

Adult ADHD is common, complex, and often difficult to diagnose and treat. Taking a public health approach to adult ADHD will improve the lives of adults with ADHD across populations. This will require up-to-date diagnosis and treatment guidelines along with training and education for providers. Most importantly, the approach will need to embrace inclusivity regarding patients and others with lived experience. (Blanco, Childress, Goodman, Green, Higgins, Robinson, Seliby Perkins, Solanto, Walker)

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Disclaimer:
This page is a factual summary of what occurred at the workshop. The statements, recommendations, and opinions expressed are those of individual presenters and participants. These views are not necessarily endorsed or verified by the National Academies of Sciences, Engineering, and Medicine, and they should not be construed as reflecting any group consensus.