Where Are the Adult ADHD Guidelines?

Nearly 4 years after work began on the first US clinical guidelines for adult attention-deficit/hyperactivity disorder (ADHD), clinicians are still waiting.

The delay comes as recognition of ADHD in adults has grown sharply in recent years, with diagnoses rising and more than half of cases now identified after age 18.

Although Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) criteria were expanded to better capture adult symptoms, experts believe they are still too narrow. Compounding the issue is the lack of US adult-specific clinical guidelines and limited provider training in diagnosing ADHD in this population.

“It’s only in recent years that practitioners and the research literature have reflected the fact that ADHD doesn’t go away after childhood,” Brooke Molina, PhD, president of the American Professional Society of ADHD and Related Disorders (APSARD), told Medscape Medical News.

“The consequence of that is that many practitioners, clinicians, providers of behavioral healthcare don’t have training in care of people with ADHD in adulthood.”

To fill this gap, APSARD announced plans in 2022 to develop the first US clinical guidelines for diagnosing and treating ADHD among adults, with an initial target release date of the end of 2023, which was later delayed until late 2024.

But that date came and went, and clinicians are still waiting.

Adult Guidance Urgently Needed

Following a decline in new diagnoses of ADHD among adults between 2016 and 2020, incidence increased by 15% by 2023, likely due to a combination of factors, including increased knowledge about the condition and greater access to healthcare services. CDC data show that the current prevalence of ADHD among adults in the US is roughly 6%.

Treatment of ADHD in adulthood requires specific expertise of the disorder in adults, whether a patient was diagnosed as a child or after age 18. But surveys show that knowledge is often lacking among mental health professionals and other clinicians — to the point that some clinicians have doubted the condition persists beyond childhood.

“I think one of the reasons that you get that is because people don’t know how to handle the complexities of ADHD in adulthood. So then they become dismissive because they don’t know what to do about it,” said Molina, a professor of psychiatry and director of the Youth and Family Research Program at the University of Pittsburgh in Pittsburgh.

While most clinicians acknowledge that ADHD persists into adulthood and the incidence continues to rise, experts say the clinical infrastructure has not kept pace.

“Focus and education is just not there” for adult ADHD, David Goodman, MD, LFAPA, director of the Adult Attention Deficit Disorder Center of Maryland and assistant professor of psychiatry and behavioral sciences at Johns Hopkins School of Medicine in Baltimore, told Medscape Medical News.

Another core reason for developing the guidelines was concern about stimulant overprescribing without adequate ADHD evaluations during the COVID pandemic, Goodman said.

To address these and other issues and standardize diagnosis and treatment, ASPARD formed a committee in 2022 to develop practice guidelines. Committee members were selected based on their clinical and research expertise, with an eye toward creating diversity of opinion in the subcommittees, said Molina.

Although members of the American Psychiatric Association and the American Psychological Association have been involved in developing the guidance, there has been no formal collaboration, Molina said.

Thousands of hours have gone into developing the guidelines, with the Steering Committee and subcommittee recurring meetings totaling over 2000 hours of person time, APSARD reported.

‘A Mission of Love’

Unlike similar international efforts, the ASPARD guideline project has no external funding and all of the experts who have worked on the effort since 2022 are doing so as volunteers.

For many, it is a “mission of love,” Gregory Mattingly, MD, associate clinical professor at Washington University in St. Louis, and past president of APSARD, said during a panel discussion at the APSARD conference in January in San Diego.

“There have been tremendous personal and professional sacrifices on the part of all these people for time, but also they divorce themselves from conflict of interest that were part of their professional livelihood, and everybody believes this was such an important mission,” said Goodman, who was previously involved in the guidelines but dropped off in 2024 for personal reasons.

The process has taken longer than they initially planned, due to the rigorous multi-step review and because the effort is entirely voluntary.

“We all thought [the guidelines] would be done a year ago and it’s just turned out that it’s been impossible to keep it moving at that kind of a fast pace because that would require everyone to basically double the amount of time they’re providing with no financial support for their effort,” said Molina.

Achieving consensus is difficult for any set of guidelines, particularly when bringing together diverse groups of experts with varied backgrounds, experiences, and training, she added.

Three main subcommittees proposed recommendations based on a systematic research review, focusing on screening and diagnosis, medication, and psychosocial and other nonmedical interventions.

The guidelines then passed through multiple stages of review, starting with a Delphi process to build internal consensus. The document will soon undergo a third and final review by multidisciplinary experts as well as individuals with lived experience of ADHD in partnership with Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD).

Lack of High-Quality Data

The guidelines will feature three types of recommendations: evidence-based, clinical consensus recommendations, and clinical practice points. The quality of the evidence is scored on a four-point scale. However, a key challenge has been the lack of high-quality research on adult ADHD.

“In the course of doing this, we keep running into areas that don’t have data, yet the patients exist and knowledge needs to be developed,” Molina said at the conference.

She noted that areas where the literature on adult ADHD is particularly slim include treating ADHD and certain co-occurring conditions such as autism. Data is also lacking on diagnosing and treating ADHD after mid-adulthood and whether the expression of ADHD in women should lead to revised diagnostic criteria.

Clinical consensus recommendations and practice points will draw on experts’ wisdom and experience from their practice. The committee will also highlight crucial areas where more research is needed.

Unlike other international efforts, APSARD will make its recommendations almost exclusively on the adult literature, Goodman said.

“That’s actually an important distinction because if you take childhood data and you extrapolate to what it might mean for adults that’s different than looking at the body of research that specifically looked at adult ADHD and then coming to recommendations,” he said.

An Important Step

Creating adult-specific guidelines is a necessary and “very important” step to move beyond criteria originally designed to diagnose children, Kathleen Nadeau, PhD, a clinical psychologist, and founder of the former Chesapeake Center for ADHD in Bethesda, Maryland, told Medscape Medical News.

Updated guidance is also urgently needed because ADHD can present very differently in men and women, said Nadeau, who was not involved in the development of the guidelines.

“It’s well agreed upon across the entire community of ADHD experts that girls have been sorely underdiagnosed and yet we never did anything to change the diagnostic criteria for children so they would be more inclusive of girls,” she said.

Nadeau, author of Understanding Girls with ADHD, pointed out that if the adult ADHD guidance omits these sex-based differences, women might remain underdiagnosed.

She also questioned the chronology of the review, suggesting the committee should be doing it “backwards,” by starting with the lived experience of adults with ADHD, then followed by the observations of clinicians.

Although APSARD is working from the DSM-5 criteria as it currently stands, experts developing the guidelines say they hope future iterations of the diagnostic manual might be able to capitalize on their efforts. They are also incorporating recommendations for how to best implement the criteria in a variety of clinical populations, Molina said.

“This includes best practices that might address barriers that have been raised specific to underdiagnosis or delay of diagnosis of ADHD in women. Unfortunately, we do not have the authority to change the DSM-5 criteria for ADHD,” she said.

Regarding the review chronology, APSARD said they are following the Institute of Medicine procedures to generate the guidelines and “agree that we need the human context,” Molina said.

The draft guidelines include some lived experience from committee members who are professionals. For the third stage of review, CHADD will coordinate the inclusion of patients with lived experience. That “will help us understand any blind spots in these guidelines and how they should be changed to avoid such problems,” Molina said.

In addition to the guidelines, APSARD is developing a three-tiered training program, ranging from a broader “ADHD 101” course to an advanced training for licensed professionals that results in one or more professional certificates. CHADD will also develop complementary training materials for nonlicensed professionals, patients, and the general public.

APSARD expects to publish the guidelines as an open-access document later this year, although there is no specific date for release. The guidelines and training modules are expected to come out at the same time.

Note: This article originally appeared on Medscape.