What is DBP? Autism screening. EndeavorRX.
Welcome to my inaugural newsletter for DBP in 1-2-3! I’ve been doing this privately for a large multi-specialty group practice since 2015. Feedback has always been positive. Developmental and behavioral concerns in children are commonplace in the primary care setting and I think many providers welcome any nugget of information or advice to better counsel their families and help their patients.
I have not had time to put together a DBP in 1-2-3 in a while. Especially challenging in this day and age with all the competing demands in life. Family duties aside, professional and clinical duties are higher than ever for me. I’ve had to learn telehealth on the fly. My practice has gone through some growing pains adjusting to new workflows to accommodate telehealth. In-person clinic has also been very challenging with all the new rules and restrictions in place due to the pandemic. Really tough to do assessments on patients when there are no toys and books in the room (with a few exceptions). Only one parent can accompany the child (no siblings, grandparents). Imagine trying to complete a good history with a dysregulated autistic toddler in the room with no parent back-up. Stressful. Demand for DBP consultations remains high. Supply is poor (in 2017 there were just over 700 board-certified developmental-behavioral pediatricians in this country, about 1 for every 100,000 children). Not unusual for children to wait over a month, sometimes over four months, before seeing someone like myself.
This segues into my first topic of the newsletter, one that I think a lot of providers think they know but perhaps wish they had a better way of explaining to their patients and families:
#1 What is Developmental-Behavioral Pediatrics?
Or, what does a developmental-behavioral pediatrician do? Or, what can me and my child expect when we visit a developmental-behavioral pediatrician?
There are several definitions out there, but this one from understood.org is my favorite. The one from healthychildren.org is also good. Bottom line when I introduce myself to patients and their families is that I am a pediatrician at heart, but one with a special interest in understanding how children learn (I toss in examples of other pediatric subspecialties like neonatology and cardiology for context). I often say that I am a “learning doctor” or “pediatrician focused on learning and how it relates to a child’s health”. I also clarify to families that I am neither a psychiatrist, psychologist, neurologist, nor therapist even though there is some overlap in what we do.
I also add that as a developmental pediatrician I am interested in how children learn all kinds of things, not just academics or school work (usually the first thing that comes to mind when children and parents hear the word “learn”). I say that I’m interested in how children learn how to communicate, relate to people, control their emotions, stay focused and organized, move their bodies, and be more independent. To me it’s really about understanding how a child functions. Are there delays, behaviors or cognitive problems that prohibit a child from functioning normally (or typically)? Parents often come with a laundry list of behavior concerns but what I really want to get at is how disruptive are these behaviors? Are they disruptive at home only, or are they also disruptive in the classroom, soccer practice, Girl Scouts, etc. A good history from the parent(s) usually tells me the answer. Teacher feedback or narratives can also be very helpful. Reports from validated behavior rating scales can provide some quantifiable way to characterize or classify the behavior but I never use them exclusively or primarily to draw any big diagnoses or conclusions.
Parents often expect that I will do “testing” at the visit. It is not unusual for parents to say “I want my child tested for ADHD or autism” as their main goal or purpose for the consultation. Testing assumes that I sit with children and do a special activity (or set of activities) with them that will generate some concrete “scores” or '“levels” that allow us to say if the child has this or that. It would be nice if we did. Believe me. But we must embrace the fact that human development and behavior operate on a wide continuum. It can be difficult to know if a child’s problems are at a disorder level. There is so much gray area and I’ve come to embrace it long ago. This goes back to the previous paragraph: it’s really about understanding how a child functions in the context and expectations of their world. This is what really makes DBP so fascinating. ADHD is seen in all parts of the world, for instance, but how it’s interpreted and addressed can vary greatly from one culture to the next.
Don’t get me wrong. Testing has it’s role and often can help clarify a child’s diagnosis or condition. But to make testing the centerpiece of a DBP evaluation would do a great disservice on understanding and appreciating the whole child.
#2 Autism Screening
One condition that is commonly seen in a DBP practice is autism spectrum disorder (ASD). I would say that it represents a third to half of the consultations I receive (whether it is for an evaluation for an autism diagnosis or a specific concern in a child with an established diagnosis of ASD). We’ve come a long way in how we screen for autism in primary care but one recent study made a splash in showing us that we still have a long way to go. Paul Carbone, MD, and his colleagues at the University of Utah did a large retrospective cohort study and identified several barriers to autism screening, including Hispanic children being less likely to be screened, frequent false negatives, and failure to complete the follow-up part of the M-CHAT (the most commonly used screening tool for autism in primary care). What also struck me from the study was that family physicians were less likely to screen patients and nearly half of providers did not typically refer screen positive children for autism evaluations. I see this frequently in my practice. Although no data to support it, I suspect family physicians are referring less for autism and more likely to take a wait-and-see approach to referral. Family physicians just don’t get nearly the intensity of training in DBP during residency to sniff out developmental delays or behavioral problems in young children. But I think a lot of kids are falling through the cracks in pediatrics too. It’s partly the ubiquity of the M-CHAT. Parents know what it’s all about and they may be in denial of their child’s condition (or normalizing their delays and behaviors). Jenny Radesky, MD, summed it up nicely in her comment in the NEJM Journal Watch:
we will need to figure out whether ASD screeners can be improved to have fewer false negatives, and until then remember that a negative MCHAT doesn't indicate zero risk for ASD.
Until we come up with better screening tools (hopefully one that can combine a validated parent questionnaire with an in-person activity or observation, the M-CHAT is the gold standard because of it’s ease of administration, it’s a free tool (it’s baked into many EMR systems), and it's available in multiple languages. Unfortunately, many practices are still using the original M-CHAT and not the revised version with follow-up (M-CHAT-R/F). As Diana Robbins, PhD, the author of the tool, states on the M-CHAT website:
We strongly recommend that users switch to the new version, also known as M-CHAT-R/F. The revised tool reduces the false positive rate and detects more ASD cases than the original M-CHAT when used during routine pediatric check-ups. The M-CHAT-R/F is valid for children 16-30 months old.
Perhaps we need to go beyond just a simple screening tool in primary care and develop autism screening and evaluation systems, such as the one discussed in a paper that was also published in Pediatrics in August by Rebecca McNally’s, PhD, and her colleagues. The paper highlighted the Early Autism Evaluation (EAE) Hub system, a statewide initiative in Indiana to improve ASD screening and diagnosis in the state, starting with primary care. It’s a promising way to identify children with ASD earlier and improve access to care. What was really neat reading about the program was how it was designed to empower primary care providers with support and training and establish standardized clinical pathways. Having local or regional champions is a key component because it reduces the burden on specialty centers and allows children to get diagnosed earlier (and thereby start intervention sooner). In that study, the mean age of ASD diagnosis of children who participated in EAE was 30 months. The national average is 48 months or more.
#3 EndeavorRx
ADHD is also quite common to see in a DBP practice. I would estimate it represents about a third to half of cases in my clinic (either for consultation for a possible diagnosis or to start treatment). There is a long history of novel, complementary and alternative treatments for ADHD. Understandably, many parents want to avoid medication because of side effect concerns and stigma, and behavior therapy is often too slow or laborious (though both remain highly effective and safe treatments for ADHD). Video games have shown promise for several years now as an effective treatment for ADHD. This comes from numerous research studies, but now EndeavorRx takes the mantle as the first FDA approved video game for the treatment of ADHD. Although the requests have tapered off somewhat over the summer, at one point I was getting weekly inquires from parents about it. At this time Akili, the company who makes Endeavor, has a waitlist and are not taking any prescriptions.
There is often a lot of promise and hype around new treatments for behavioral conditions or disorders, like ADHD. The early studies of Endeavor suggest a greater than 50% improvement in attention/focus after two months of treatment, but long term studies (i.e. more than 6 months) have yet to be published. Also notable is that the study was funded by Akili, so keep that in mind. To Akili’s credit, they do not claim Endeavor to replace other established and recommended treatments for ADHD. It is likely that video games like Endeavor will play a role for some patients in the treatment of ADHD, but the most effective treatment approach for ADHD remains multimodal.