Remote ADHD Research in the time of COVID
I was invited to write this blog after transitioning our ADHD Clinical and Translational Studies Program to tele-research. For several reasons, the actual technological aspects of the process were a relatively simple accomplishment. Writing this blog, less so.
The main reason for the ease and rapidity of our digital transformation was that we are housed in a Research 1 academic medical center with impressive capacities and infrastructure. The technology for digital research, digital education, and digital therapeutics has existed in abundance for decades (see Marhefka et al, 2020). Once the administrative barriers at our institution were dropped, I made quick use of pre-vetted digital research tools that are regulatory compliant, and have been in use across many health fields with the exception of psychiatry. Our Information Technology and Infosec data security departments offered us options of using technology provided by small private vendors, developing our own apps, assembling a series of Google apps, or using a selection of internal resources.
Though I will try to present some useful information, it would not be feasible to write a review of all the potential applications useful for flipping a research program to tele-research in this space. Nor, I think, would the bulk of the clinically-oriented APSARD membership be interested in such finely detailed technology reviews. But, there is a commonality of interest shared between clinicians and clinical researchers in this transition to high-tech practice. The same forces that pushed our team to tele-research also pushed most clinicians’ practices online. This is uncharted territory for many psychologists and psychiatrists who worry about what we miss when we are not physically present with a patient, participant, or client.
We responded to an emergency, driven by a desire to protect our patients and our teams. We all sought to adhere to our fields’ regulatory and practice standards. We share common concerns about building rapport and maintaining alliances with our patients in the digital environment. We share the need to harness tech tools, collect accurate self-reports, and make professionally sound observations at a distance. Ultimately, as we shifted our work modalities, we upheld our ethical obligations to our participants, and maintained the superior standard of care for which we are regarded. Now that we are a month into the social-distancing of our lab, the immediate actions that our lab’s principle investigator took to protect us is reflected in the guidance being issued by our local and external IRBs, and the compliance teams with which we work.
We have had successes worth maintaining after life returns to normal. We established secure databases that disseminate and archive consents and self-report scales. They are attractive, easy to use, and regulatory compliant. They are automatically time stamped, date stamped, and audited, and viewable by both the respondent and the study team member on the back end of the interface. When paired with video-conferencing, this provides a good substitute for face-to-face meetings. Our research partners are able to use these same databases with their own participants, making multisite data collection and single IRB coordination both simpler and more secure. The videoconferencing also allows our clinicians to provide continuous care while travelling, or when otherwise off-site. It also allows busy patients to receive care when they cannot attend a scheduled appointment, preventing data loss and encouraging continued compliance with our protocols.
There are some serious challenges to still overcome in our digital shift. We have no way of performing virtual fMRI at the moment. While I am watching the development of wearables and portable technologies with interest, none yet provide the same type of data. With an abundance of caution, we paused a study that collected saliva for genotyping, lest we unintentionally expose the collectors and ship COVID-19 pathogen to our colleagues’ lab. This is not a problem with a lack of technology or distance resources. This is a complication of the unprecedented time in which we live. We also have some difficulty with drug dispensation and return for our clinical trials at the moment. We can courier drug directly from the sponsor to participants, and count drug over video-call, then have the couriers pick up the drug to return to the sponsors. But drug returned to our site will sit in our institution’s mail-room until personnel can be on-campus to receive them. Right now, the Samaritan’s field hospital is at the end of our block, and no one is entering our building. And external vendors can be unreliable. I watched with great annoyance as the VSee telehealth free platform, recommended by our institution, fell apart AFTER we submitted several applications for approvals for their use. Fortunately, Zoom and even FaceTime are HIPPA compliant, institutionally approved, and free alternatives for video calls. These are useful for research, since researchers do not need integrated payment features. This week, though, our city’s Department of Education pulled out of using Zoom for their classes due to privacy and security issues. I am waiting to see whether this impacts our research program, or whether the housing of Zoom behind our institutional firewalls enables us to remain compliant with Zoom. FaceTime can be ‘buggy’ when there are multiple parties on the call, as often happens with research visits. I have other platforms in the bullpen, just in case.
This flexibility of choice is an ephemeral thing in an institution as large as ours. At some point, these temporary freedoms will end. With our teams of regulatory specialists blessing any changes intended to protect participants, the Infosec data security unit providing lists of pre-approved platforms, and the Dean’s office waiving barriers to accessing these pre-approved tools, the bulk of our transition was made within a week. When these gifts are rescinded, similar feats will take months or years to accomplish. But, when normalcy returns, we will still have access to Virtual Private Networks (VPNs) to safely, securely, and HIPPA compliantly manage our regulatory and data archives. And, we will be allowed to retain what we have built behind our institutional firewalls. Our data, and systems, and participants will be secure. We will go back to having face-to-face meetings. But, we will retain the many valuable aspects of tele-research.
For additional reading about the use of technology in the research domain, read:
Marhefka, S., Lockhart, E. & Turner, D.A., (2020). Achieve Research Continuity During Social Distancing by Rapidly Implementing Individual and Group Videoconferencing with Participants: Key Considerations, Best Practices, and Protocols. AIDS and Behavior: Notes from the Field. https://doi.org/10.1007/s10461-020-02837-x
ADHD Among Seniors: APSARD Members in the News
APSARD members David Goodman, Kathleen Nadeau, Lenard Adler, and Sandra Kooij recently discussed with the Wall Street Journal’s Sumathi Reddy the importance of properly diagnosing and treating ADHD among older adults. The article, ‘An Unexpected New Diagnosis in Older Adults: ADHD’, juxtaposes patient perspectives with those of expert care providers in this underserved demographic and highlight the need for better provider education. Read the article here:
For years, ADHD has been considered a disorder of kids and younger adults. Now, doctors are realizing older people have it too—and it’s sometimes mistaken for dementia.
Many seniors get diagnosed with conditions like dementia or heart disease.
Not Timothy McMichael. At the age of 60, he was diagnosed with a condition most often associated with school children: attention-deficit hyperactivity disorder. He started taking a low dose of a stimulant about a year-and-a-half ago and says his attentiveness and concentration at work have never been better.
“I’ve been fairly successful in my life and career, and did not think of ADHD as an adult thing,” says Mr. McMichael, a 61-year-old Leonardtown, Md., resident and engineer for the Department of Defense. “But I had spent the last 40 years coming up with coping mechanisms.”
Like many older people diagnosed with ADHD for the first time, Mr. McMichael didn’t consider the condition until his then-11-year-old son went through the diagnosis and treatment process about five years ago. He recognized many of the symptoms and struggles of his son and raised the issue with his son’s psychiatrist, David Goodman.
Dr. Goodman, an assistant professor of psychiatry and behavioral sciences at Johns Hopkins University School of Medicine, sees patients between the ages of 15 and 85. He has a particular interest in ADHD patients who are over 50 and have never been diagnosed.
Until just a few years ago, older adults were hardly ever diagnosed with ADHD. But as awareness of the condition among younger people has surged, doctors are beginning to make the diagnosis more often in seniors as well.
Doctors don’t believe the actual prevalence of the condition among seniors has increased, or that they are developing the condition as they age. Instead, doctors suspect many seniors have lived their whole lives with ADHD, and only now are getting diagnosed. Many found ways to manage their symptoms in earlier stages of life, but hit a new hurdle as they aged that prompted a flare-up—or simply recognized the symptoms after a younger relative’s diagnosis.
People with ADHD experience symptoms of inattention, disorganization and hyperactivity. Often hyperactivity diminishes with age, but challenges with attention and organization don’t.
Research on ADHD in seniors is nascent, but one study estimated the prevalence rate in people over 50 at 3%. That compares with about 8% in U.S. children and about 4.5% in adults under age 45. Some studies have found that about half of the children diagnosed with ADHD no longer meet diagnostic criteria by the time they reach adulthood.
One challenge to diagnosing ADHD in seniors is that symptoms look similar to age-related ailments. Cognitive difficulties in older people are often attributed to memory impairments or early signs of dementia, says Dr. Goodman. For women in their early 50s, such complaints are often attributed to perimenopause, the time before a woman reaches menopause.
Treatment presents another hurdle. The most common ADHD treatment among younger people is stimulants. But those are riskier in older adults because they can raise heart rate and blood pressure, so they need to be monitored closely.
Kathleen Nadeau, founder and clinical director of the Chesapeake Center, an ADHD, learning and behavioral health clinic based in Bethesda, Md., says she has seen three typical patterns for a diagnosis in seniors. Some patients were in treatment for another condition, like depression, and their psychiatrist suggested they get evaluated for ADHD. Another group had a relative or friend diagnosed. A third had a change in their life that increased the demands on them and they couldn’t cope.
She says ADHD symptoms rise and fall in people depending on how stressful their circumstances are. “If you don’t have to work or raise children anymore, it may look like you have less ADHD, but you actually have less demands,” says Dr. Nadeau. “If you’re put back in a situation you may have similar difficulties. This doesn’t go away and people still need help” at older ages.
Lenard Adler, director of the adult ADHD program at NYU Langone Health, says more people over the age of 60 are coming in with ADHD symptoms. Of the older patients he’s treated, some found him after other psychiatrists were unwilling to treat them, he says. One patient had a history of hypertension and cardiac problems. He was able to successfully treat the patient with a long-acting amphetamine.
Dr. Adler says it’s important to distinguish between memory and ADHD issues in seniors. “We’re dealing with a population that may have some age-related memory decline,” he says.
In some cases, patients may mistakenly be diagnosed with mild cognitive impairment, often a precursor to dementia. But other times families may be looking for any diagnosis besides cognitive decline. One family brought in their loved one hoping it was ADHD and not dementia. The patient, says Dr. Adler, was “having a substantial cognitive decline and it obviously was dementia. So it can go both ways. It’s important to get the diagnosis right.”
Doctors say that age-related memory impairments come on later in life and are primarily memory deficits, while ADHD symptoms start in childhood or early adolescence and revolve around inattention. While neuropsychological tests can’t distinguish between the two, certain cognitive impairments are associated with pre-dementia, such as difficulty remembering a word or getting lost while driving a familiar route.
Treatment of ADHD in older adults is similar to that of younger patients. Treatment can combine prescription stimulants with non-medication approaches such as cognitive behavioral therapy and organizational skill work. A study published last year showed that CBT was an effective treatment for older ADHD patients.
Dr. Goodman says most ADHD studies of stimulants don’t include seniors because of greater risks with heart rate and blood pressure. There is also a risk of developing insomnia, agitation and psychosis.
Dr. Goodman’s experience in treating some 800 seniors over the past three decades has shown few side effects, he says. He says diagnostic accuracy is crucial in seniors before prescribing any medications. “Dosing is thoughtfully slow while monitoring improving cognitive symptoms, side effects and blood pressure,” he says.
Sandra Kooij, an associate professor of psychiatry at Amsterdam University Medical Center, studies ADHD in seniors in the Netherlands. At her clinic they have treated about 150 seniors age 55 and older with stimulants, in addition to psychoeducation and cognitive behavioral therapy, for ADHD.
Dr. Kooij says they are analyzing the treatment and side effects for a study they hope to publish later this year. Overall efficacy has been similar to younger adults, and the medications were well tolerated with appropriate management of cardiovascular risks, she says. Patients were also treated for conditions like anxiety and depression that often present in ADHD patients, and sometimes occur as side effects of stimulants.
Seniors that have lived with ADHD all their lives and don’t feel impaired shouldn’t be treated, she notes. “Only people who feel impaired by their symptoms should be treated,” she says.
Joan Friess, a 76-year-old who lives in a senior community in Coconut Creek, Fla., was diagnosed with a precursor to Alzheimer’s disease about five years ago and started taking medication for it, says her son, Steve Friess, a freelance writer who lives in Ann Arbor, Mich.
But Ms. Friess never believed the neurologist who diagnosed her, both mother and son say. She is an advanced bridge and mahjong player and sings with an elite choir with no problem.
After her husband died and she moved to a different part of Florida, she decided to see a different neurologist.
Mr. Friess talked to the neurologist, who asked him if his mother’s behavior was different than most of her life. “I said, ‘No, not really,’ ” he recalls. “She was always losing things and a bit forgetful.”
The neurologist did some brain scans. Comparing them with previous scans, she said she saw nothing to indicate Alzheimer’s disease or dementia. Instead, she diagnosed Ms. Friess with ADHD.
Ms. Friess says she was relieved to confirm what she knew all along. “My husband thought I was forgetting things, but I knew there was nothing wrong with me,” she says.
Mr. Michael, the Department of Defense engineer, says even though he’s had a successful career, he can’t help but wonder how earlier treatment might have helped him. He says even his colleagues noticed his improved performance at work. “I’m much more focused on individual tasks,” he says. “I’m more efficient in how I use my day. I think my life absolutely would have been a lot easier had I known.”
Read the Article on the WSJ site:
Write to Sumathi Reddy at email@example.com
Knowledge/Understanding, Perception and Attitude Towards ADHD in Indonesia
Nandini Jhawar & Kevin Antshel, Ph.D.
Department of Psychology
ADHD Lifespan Treatment, Education and Research (ALTER) program
ADHD prevalence rates in low- and middle- income countries (LAMICs) are approximately 6.1% (Bitta, Kariuki, Abubakar, & Newton, 2018), but the majority of ADHD research takes place in high income countries, like the United States, Western Europe, and China. Murtani and colleagues (2020) surveyed 1,536 Indonesian community members, teachers, general practitioners, medical students, pediatricians, and psychologists about their levels of knowledge regarding ADHD symptoms and treatments, perceptions of ADHD symptoms impact upon daily functioning, and attitudes towards ADHD treatment. Most healthcare professionals had heard of ADHD, but more than half the general practitioners, pediatricians and psychologists were classified as having poor to very poor range of knowledge and understanding of ADHD, perceptions of ADHD, attitudes towards ADHD. The majority of psychologists did not consider ADHD to be a mental disorder. Close to 60% of psychologists in the study endorsed flavoring ingredients as a risk factor for ADHD and only 30-40% of psychologists agreed that Methylphenidate and Atomoxetine should be used in ADHD treatment. Only 32% of the community sample were familiar with ADHD, although most knew the term “hyperactivity.” Community members and medical students obtained most of their information regarding ADHD from online sources, while teachers obtained their information from media sources, and medical practitioners from books.
The results from the Murtani et al. study are important for building understanding of existing knowledge, perceptions and attitudes towards ADHD diagnoses and treatment in LAMICs and Asian countries beyond China. Collectively, these data suggest that ADHD knowledge, perceptions and attitudes in Indonesia are considerably lower than what is reported in other countries, including in other Asian countries. Murtani and colleagues note a circularity to this problem: without any experiences regarding ADHD, Indonesians lack important information regarding the condition, leading to poor attitudes and perceptions surrounding ADHD. In 2016, the Indonesian Psychiatric Association established an ADHD diagnosis and management guideline which was specifically developed for general practitioners and pediatricians. In addition to policy level work such as this, Murtani and colleagues recommended culturally sensitive psychoeducational interventions for community members and healthcare professionals to optimize intervention outcomes.
This line of research has important clinical and public policy implications as countries with more limited resources, such as Indonesia, can greatly benefit from incorporation of evidence-based interventions into existing healthcare structures. Challenges such as difficulty implementing mental health services in primary care settings, difficulty disseminating treatments in rural areas, stigma associated with mental health disorders, and a dearth of knowledge about child development and childhood mental disorders all represent major hurdles for the treatment of child mental health disorders and the conduct of clinical research in all countries yet especially those with more limited resources.
Bitta, M., Kariuki, S.M., Abubakar, A., & Newton, C.R.J.C. (2018). Burden of
neurodevelopmental disorders in low and middle-income countries: A systematic review and meta-analysis. Wellcome Open Research, 2, 121. doi: 10.12688/wellcomeopenres.13540.1.
Murtani, B. J., Wibowo, J. A., Liu, C. A., Goey, M. R., Harsono, K., Mardani, A. A. P., & Wiguna, T. (2020). Knowledge/understanding, perception and attitude towards attention- deficit/hyperactivity disorder (ADHD) among community members and healthcare professionals in Indonesia. Asian Journal of Psychiatry, 48, 101912. doi: 10.1016/j.ajp.2019.101912
ADHD Symptoms Manifest in Automatic and Controlled Processing
Jennifer Lee, Doctoral Candidate
Beth Krone, PhD
Long Island University Post Campus
Investigating and understanding the underlying nature of attention processes in ADHD can help drive improvements in treatment. In a new study, Caprì, Santoddi, and Fabio (2020)1 examined whether children with ADHD exhibited deficits in automatic and controlled attentional processes, compared to typically developing (TD) children. They administered the Multi-Source Interference Task (MSIT2,3) to characterize automatic and controlled attention among 60 youth: ADHD-Inattentive presentation: boys = 17, girls = 3; M = 8.50 years, SD = 4.52; ADHD-Combined presentation: boys = 16, girls = 4; M = 8.50 years, SD = 4.51; and typically developing controls: boys = 33, girls = 7; M = 8.50 years, SD = 4.53. The MSIT measures responses to task with incongruent (associated with controlled processing) and congruent (associated with automatic processing) stimulus conditions over the course of 3 hours.
On congruent trials characterizing automatic processing, despite some variability between the ADHD-I and ADHD-C group’s performance, the team found no significant differences between clinical groups and controls in accuracy of responses. The ADHD-I group responded significantly more slowly to these task prompts, indicating difficulty with processing speed. On congruent trials characterizing controlled processing, the ADHD-I group’s accuracy was lower than the TD group. Further, both ADHD groups scored significantly lower than the TD group for attentional processing overall, indicating more difficulty with attentional processes in the clinical groups.
The authors suggested that differences in performance across groups for congruent and incongruent trials indicate that automatic and controlled processing are linked entities, in support of findings from a prior study from their lab4. Findings such as these support the literature surrounding executive control problems among individuals with ADHD, and add to the body of evidence supporting the neuropsychological hierarchy of attentional processes.
All clinicians, and particularly clinicians-in-training, benefit from a strong understanding of the underlying mechanisms driving attention and performance in ADHD. We may not currently, as a field, have the tools to elucidate all mechanisms of ADHD. We do, however, have well-validated and reliable tools that allow us to objectively characterize certain aspects of cognitive processing that transfer to behaviors. These behaviors translate to symptom profiles, although not always neatly or uniformly for all individuals. By characterizing what we can, we find targets for intervention and begin to personalize treatments. Where bottom-up (automatic) and top-down (controlled) deficits may not precisely model performance measured within or across all ADHD presentations, future work should continue to examine the factors that differ between ADHD presentations and with co-occurring disorders, and across developmental stages. Youth who exhibit deficits in these cognitive functions may benefit from high quality assessment and clinical treatment planning targeting their needs.
- Caprì, T., Santoddi, E., & Fabio, R. A. (2020). Multi-Source Interference Task paradigm to enhance automatic and controlled processes in ADHD. Research in Developmental Disabilities, 97, 103542.
- Bush, G., & Shin, L. M. (2006). The Multi-Source Interference Task: an fMRI task that reliably activates the cingulo-frontal-parietal cognitive/attention network. Nature protocols, 1(1), 308.
- Bush, G., Shin, L. M., Holmes, J., Rosen, B. R., & Vogt, B. A. (2003). The Multi-Source Interference Task: validation study with fMRI in individual subjects. Molecular psychiatry, 8(1), 60.
- Fabio, R. A., & Caprì, T. (2019). Automatic and controlled attentional capture by threatening stimuli. Heliyon, 5(5), e01752.
The annual meeting of APSARD is an opportunity to bring experts together to share knowledge and build collaborative relationships for improving research and clinical practice. In a poster, “Neuropsychological Assessment Discriminates ADHD-I from SCT by Parent Report”, Beth Krone, PhD, Anne Claude Bedard, PhD, Kurt Schulz, PhD, Iliyan Ivanov, MD, Jeffrey Newcorn, MD, and research assistants Logan Downes, Quinn Downes, Amanda Kirschenbaum, presented an exciting (although relatively weak) double dissociation finding that suggests parent report measures of ADHD and SCT may map onto objective measures of qualitatively, and subtly, different clinical features of attention problems.
Prior research presented by this team at APSARD has examined the construct of Sluggish Cognitive Tempo (SCT). First, the team presented an examination of the SCT construct in a two-site clinical trial of N=235 youth, of whom greater than 60% had clinically significant SCT as measured by the Child Behavior Checklist (CBCL). The CBCL provides T scores according to gender and age norms for SCT behaviors. To test the validity of the CBCL reports, the investigators also collected reports of SCT behaviors from other scales used to characterize their cohort. While there was a trend toward greater across-scale reporting among parents of youth with ADHD-Inattentive presentation than ADHD-Combined type, the additive value of the additional symptom measures was small. Next, the team analyzed latent constructs that contributed to SCT reports among the cohort, and found two separate constructs that contributed to high SCT ratings: a depressive/anxious construct; and a somatic complaints construct.
In further research, the team examined the SCT’s influence on medication treatment response. The team’s findings were consistent with the body of literature stating that higher SCT scores correlate to greater functional impairment, and greater variability in treatment response, less improvement of ADHD with treatment. The treatment effect in this team’s study was attenuated by non-stimulants as compared to stimulants.
The new research being presented by this team examines the neuropsychological correlates of the SCT construct within ADHD by comparing N=107 youth with ADHD and N=30 healthy youth who completed both the Conner’s Continuous Performance Test (CPT-II) and the Attention Networks Test (ANT). The CPT-II is a norm-reference clinical task that assesses attention problems in ADHD, and the most common and consistent finding across ADHD cohorts has been a high variability of performance, yielding high scores for Hit-Rate Standard-Error, and Variability measures. The ANT is a well-validated research measure that has been used extensively to map attention networks among youth with and without ADHD. The ANT provides three network scores: one for attentional alerting; one for orienting attention; and one for executive control. This team hypothesized that SCT’s characteristic sluggishness might best be categorized as a deficit in altering.
Results: The double dissociation of ADHD and SCT was significant, but not particularly strong, with ANT Alerting accounting for about 8% of the variance in SCT reports. However, ANT Alerting (and no other ANT score) associated with ADHD scores. CPT-II measures of performance relating to fluctuations in attention accounted for between 7% and 10% of the variance in ADHD reports, but no CPT-II measure is associated with SCT reports.
Conclusions: This research shows that SCT and ADHD attention problems can each be assessed using different well-validated objective measures of attention. However, the SCT construct within ADHD is far from explained by these differences in neuropsychological testing. Given the strong two-latent class factor structure (factor 1 = depression/anxiety and factor 2 = somatic (physical) illness) associated with SCT in prior analyses, and given the conceptual similarities between SCT symptoms and those of the cytokine mediated sickness response, the team’s hopes to further examine inflammatory biomarkers within the ADHD population. Our hypothesis is that, for a larger portion of the ADHD population, SCT may be a clinical indicator of inflammatory processes either as a prodrome of depressive disorders, or associated with atopic illnesses so common among the ADHD population.
A Brief History of ADHD
I have too often seen on the Internet or media the statement that ADHD is a recent invention of psychiatrists and/or pharmaceutical companies. Such statements ignore the long history of ADHD that my colleague and I reviewed in our “Primer” about ADHD, http://rdcu.be/gYyV. As you can see from The Figure, ADHD has a long history. The first ADHD syndrome was described in a German medical textbook by Weikard in 1775. That’s not a typo. The ADHD syndrome had been identified before the birth of the USA. Dr. Weikard did not use the term ADD or ADHD, yet he described a syndrome of hyperactivity and inattention that corresponds to what we call ADHD today. As you can see from the Figure, ADHD-like syndromes were described in Scotland in 1798 and in France in the late 19th century. The first description of an ADHD-like syndrome in a medical journal was by Dr. George Still in 1901 who described what he called a ‘defect of moral control” in The Lancet. The discovery that stimulant drugs are effective in treating ADHD occurred in 1937 when Dr. Charles Bradley discovered that Benzedrine (an amphetamine compound) improved the behavior of children diagnosed with behavioral disorders. In subsequent years, several terms were used to describe children with ADHD symptoms. Examples are Kramer-Pollnow syndrome, minimal brain damage, minimal brain dysfunction and hyperkinetic reaction. It was not until the 1980s that the term Attention Deficit Disorder (ADD) came into widespread use with the publication of the American Psychiatric Association’s Diagnostic and Statistical Manual (DSM). During the ensuing decades, several changes were made to the diagnostic criteria and the term ADD was replaced with ADHD so as not to overemphasize either inattention of hyperactivity when diagnosing the disorder. And, as the graphic below describes, these new and better diagnostic criteria led to many breakthroughs in our understanding of the nature of the disorder and the efficacy of treatments. So, if you think that ADHD is an invention of contemporary society, think again. It has been with us for quite some time.
Faraone, S. V. et al. (2015) Attention-deficit/hyperactivity disorder Nat. Rev. Dis. Primers doi:10.1038/nrdp.2015.20 ; http://rdcu.be/gYyV