Since we spoke with the founders of TriVox Health in 2014, their disease management program has taken off. The program began in Boston Children’s Hospital’s Division of Developmental Medicine as a way to more efficiently collect information on children’s ADHD symptoms from parents and teachers. It is now a user-friendly, web-based platform for tracking multiple conditions, incorporating medication confirmation, side effects reporting, disease symptom surveys and quality of life measures.
You’d think drugs for a condition affecting millions of children would be tested in many, many children to catch any rare side effects.
You’d think all this would happen before the Food and Drug Administration, an agency known for its strict criteria, approved them for marketing.
In it, the pair reports that the FDA approved 20 attention deficit hyperactivity disorder (ADHD) drugs over the last 60 years without what would be considered sufficient long-term safety and rare adverse event data.
Their findings, they say, point to larger issues in how the FDA’s approval process addresses the long-term safety of drugs intended for chronic use in children. …
Eugenia Chan, MD, MPH, is a developmental-behavioral pediatrician and health services researcher in the Division of Developmental Medicine at Boston Children’s Hospital. She runs the Developmental Medicine Center’s ADHD Program and is co-developer of ICISS Health, a web-based disease monitoring and management system.
When I set out with my collaborator Eric Fleegler, MD, MPH, to build a web-based tracking system for children with attention deficit hyperactivity disorder (ADHD), we focused on a single problem—getting parents and teachers to fill out symptom questionnaires in time to help doctors make informed clinical decisions at follow-up visits. We had no inkling of the possibilities that this kind of software platform could hold, or how it might grow in the future. …
Maitreyi Mazumdar, MD, MPH, practices pediatric neurology at Boston Children’s Hospital. She leads a research program in Bangladesh that studies the effects of the epidemic of arsenic poisoning on neurological outcomes in children.
Neurodevelopmental disorders, including autism and attention deficit/hyperactivity disorder (ADHD), affect many millions of children and appear to be increasing in frequency worldwide. Improved diagnosis and changes in diagnostic criteria explain a portion of the rise, but not all. In other words, the increase in neurodevelopmental disorders seems to be “real.”
To date, research has mainly invested in finding genetic causes, implicating biological pathways that affect, for example, the formation of synapses and the production of neurotransmitters. Such discoveries improve our understanding of the basic biology of neurodevelopmental disorders and may ultimately lead to new therapies. But genetic variants alone cannot explain the recent rise; if they did, population rates of neurodevelopmental disorders would be expected to stay the same, or even decrease over a 30- to 40-year period, due to affected people likely having fewer children. Instead, reported rates have steadily increased over the past several decades. Something else is going on. …
It was a chance encounter. Eugenia Chan, MD, MPH, and Eric Fleegler, MD, MPH, both worked at Boston Children’s Hospital, and had met one another once or twice, but only in passing.
Running into each other at a conference, they fell to chatting. Chan, a pediatrician in Developmental Medicine, was looking for a way to measure how well patients with attention deficit hyperactivity disorder were responding to their medications. Fleegler, an emergency physician and health services researcher, described an online software program he developed to screen patients for health-related social problems and connect them with relevant services.
Last month, the American Academy of Pediatrics released new guidelines on attention-deficit hyperactivity disorder (ADHD), lowering the minimum age at which physicians should consider drug treatment from 6 years to 4 years.
But here’s the problem. “Current behavioral criteria for ADHD are most effective only after age 8 or 9,” says Margaret Sheridan of the Laboratories of Cognitive Neuroscience at Children’s Hospital Boston. “If you use them at age 3 to 6, then you’re wrong about half the time, and the child will stop meeting the criteria by age 8.”
Little kids, especially boys, are naturally distractible, impulsive and fidgety. Some mature more slowly; some are just the youngest in their class. Many will grow out of their wild but largely age-appropriate behaviors.
But letting true ADHD fester, explaining symptoms away as “kids just being kids,” deprives children of the benefits of behavioral or pharmacologic treatment at a time when their young brains are highly responsive. …
At a conference in Texas a couple of years ago, I found myself – as at all good national conferences — talking to a colleague from my own institution. As we browsed the poster session, we talked about our respective work.
Eugenia Chan works in the Developmental Medicine Center at Children’s Hospital Boston, where I’m an emergency physician and health services researcher. I told Eugenia about The Online Advocate, a Web-based system I’d been developing for the past eight years. It screens patients and families for health-related social problems, provides feedback and helps them find services in their area that can assist them.
Eugenia was excited about bringing The Online Advocate to her patients.“This is really great, and I want to use it,” she said. “But I have another idea that I would like to explore with you.” …
This is how it used to be when I saw a child with attention-deficit hyperactivity disorder: “You know, Dr. Chan, I really don’t think the medicine’s working,” the parent would tell me. “I just don’t see any difference in his behavior.”
“Well, the medicine has probably worn off by the time you see him at home,” I’d say. “What does his teacher think?”
“She hasn’t called me, so I assume there hasn’t been any trouble.” Then: “Oh—I was supposed to give her that questionnaire to fill out, wasn’t I? I’m so sorry, I totally forgot.”
As a developmental-behavioral pediatrician specializing in ADHD, I used to have this conversation with parents at almost every single follow-up visit, leaving me frustrated. …