Effort Underway to Develop First U.S. Guidelines for ADHD in Adults

 The number of diagnosed cases of attention-deficit/hyperactivity disorder (ADHD) have increased significantly among adults in the United States within the past decade, which could be due to many factors, including overdiagnosis. A recent JAMA study found that diagnoses of ADHD in adults are growing four times faster than in children.

Other research tells another story: that clinicians misdiagnose or miss ADHD in adults and that fewer than 20% of individuals with ADHD are diagnosed and treated by clinicians.

Frances R. Levin, MD, the Kennedy-Leavy Professor of Psychiatry at Columbia University and an internationally recognized expert in adult ADHD, says both underdiagnosis and overdiagnosis of the disorder in adults are likely true.  

“It’s difficult to get a clear picture of how many individuals in this country fit a clinical definition for ADHD, when there are no U.S. guidelines for diagnosis and evaluation of ADHD in adults,” Dr. Levin said. She added that practice guidelines currently exist only for childhood ADHD.

Prior studies suggest that between 2.5 percent and 4.4 percent (11 million) Americans over the age of 18 are affected by ADHD—with diagnoses of men nearly three times that of women.

To gauge the true scope of the problem and improve the quality of care, the American Society of ADHD and Related Disorders (APSARD) recently appointed a special committee to write the first-ever, authoritative guidelines for adult ADHD in the U.S. The group, composed of international and national ADHD researchers and clinicians, is co-chaired by Dr. Levin and Dr. Thomas Spencer (retired), Massachusetts General Hospital.

Columbia Psychiatry News spoke with Dr. Levin about the symptoms and behavioral patterns in adult ADHD, the need for diagnostic and treatment guidelines, and concerns about the use of stimulant medications often prescribed for the disorder.

The American Psychiatric Association has set practice guidelines for major depressive disorder and schizophrenia, but not for adult ADHD. Why has it taken so long, and why the push now?

When I started doing work in this area in the early 1990s, there was a belief that ADHD diminished with age and much consternation in the scientific community about the validity of the diagnosis in adults. Then, in the 1990s, the increase in diagnoses of childhood ADHD led to greater public awareness. More adults began to recognize and report symptoms in themselves, and in 1994 adult ADHD (aged 17 years and older) was included in Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) for the first time. A major issue, however, is that older psychiatrists were not schooled in evaluation and treatment of adults, and even now younger clinicians can go through their residencies without getting much training or experience treating this population. Additionally, primary care practices are typically the first point of contact when adults with ADHD need care, and the creation of uniform standards will address a critical need for health providers, patients, and the public.

What are the symptoms of ADHD and do they differ in children and adults?

ADHD is a neurodevelopmental disorder characterized by an ongoing pattern of inattention, hyperactivity, and impulsiveness in both children and adults.  But how the disorder manifests itself can differ. With children, hyperactivity is often the main symptom, more often in boys than in girls, who tend to be quietly inattentive. This is one reason the diagnosis in girls is often missed, which can lead to a lifetime of self-esteem problems and missed treatment opportunities. While behavior may change as people grow older, those diagnosed with ADHD later in life likely experienced symptoms before age 12. Symptoms that may have been masked by protective influences, such as parental guidance or good grades, can later result in significant problems that interfere with daily functioning. Individuals with untreated ADHD often develop one or more co-occurring conditions, such as depression or an anxiety disorder. They have a high risk of dropping out of school, losing jobs, financial debt, divorce, and addictions. The negative consequences are costly for individuals and society too. Research based on current prevalence rates estimates the U.S. economic impact at $105 to $195 billion, mostly driven by costs, such as unemployment and productivity loss. 

Acknowledging the new diagnostic guidelines ahead, in your experience what is the most effective way to determine whether a person has ADHD?

Evaluating for adult ADHD is a complex and multi-faceted process that can’t be accomplished in a 5- or 10-minute interview. ADHD expresses diversely across patients, and symptoms can range from mild to severe predominately inattentive, predominately impulsive or hyperactive, or a combined type. Diagnosis of coexisting psychiatric or substance use disorders is essential, as comorbidity influences both treatment approaches and outcomes. Additionally, many adults have developed coping mechanisms over time to hide or mask their symptoms and behavior. An assessment should involve multiple components, including screening tests:  a thorough medical history, including evaluation for co-occurring condition; input from family members, such as a spouse or an older sibling; and follow up for 6 months or more.

Which treatments and interventions work best for adult ADHD? And what are your thoughts about the backlash against stimulants commonly used to treat ADHD?

I am very aware of the significant increases in both ADHD diagnoses and prescriptions of stimulant medications—and their potential for misuse and diversion. The question isn’t whether these drugs are good or bad; it’s how they are used. Prescription stimulants are the first line of treatment for ADHD. They work by boosting levels of dopamine and norepinephrine in the brain that are key to the ability to pay attention, focus, and stay motivated. Stimulants are effective, but they are not for everyone. On the other hand, if you don’t prescribe them for anyone, you relegate many people to an impaired quality of life, productivity, and functioning. The risks must always be weighed against the benefits. If a patient has a substance use disorder and you are considering the use of a prescription stimulant it is critical to directly address their substance use disorder. If you’re worried about a young adult using their stimulant medication to get a high or that they might divert their medication, nonstimulant medications, such as straterra or viloxazine, might be considered. Medicine alone, however, may not be sufficient treatment for most adults with ADHD. Education, cognitive and behavioral skills training, psychotherapy, coaching, mindfulness meditation, and other approaches can help manage many of the symptoms of ADHD as well.

What will the APSARD guidelines be based on and when do you expect their release?

The guidelines will be based on a critical review the scientific literature; the APSARD Adult ADHD Quality Measures initiative, which over several years ago published metrics for assessing quality care for diagnosing and treating ADHD in adults; and the recommendations of committee of nearly 300 ADHD experts in collaboration with professional organizations. We expect the guidelines will be accessible and useful for the primary care practitioners and mental health specialists later this year.