A recent study’s results carry little surprise for veteran ADHD watchers: The quality of ADHD medical care is often lacking. That study is examined at length in this post.
But first, a few points:
- Adults with ADHD Receive Substandard Care, Too
Children aren’t the only ones receiving substandard care for ADHD. In large part, poor clinical standards for all age groups motivated me, more than 15 years ago, to first become an ADHD advocate and then to write a book.
My goal: educating readers to be smart mental health-care consumers. The sad truth is, we simply cannot rely on the average psychiatrist or psychologist, even those claiming ADHD expertise.
Soon, my new book for couple therapists will take my work a step further: training therapists to help clients get best results from medication, among other strategies.
Plus, I’ll be offering webinars on the topic for consumers—if my energy holds up! So, stay tuned and be sure to subscribe for updates. The book is called Adult ADHD-Focused Couple Therapy: Clinical Interventions, co-edited with Arthur L. Robin, PhD. You can learn more about it at the website.
- Poor Treatment Standards Diminish the Entire Legitimacy of the Diagnosis
In my experience, nothing fuels the anti-psychiatry movement’s furor like the dashed hopes of people who once hoped for better from their psychiatric treatment. So when people seeking medical treatment for ADHD end up worse instead of better, it destroys credibility for the diagnosis itself.
In fact, even the perceived failure of the famous MTA study (to show sustained medication benefit for children with ADHD) has been much bally-hooed by the ADHD deniers as proof that “medication doesn’t work.” I will explain that study in a future post, but in brief: It was the poor medical treatment received by study participants in their communities that resulted in poor outcomes. That and parents dropping the treatment entirely. But the study was never set up to track long-term benefits of medication.
The good news: Millions have benefited from ADHD treatment, but many more have been less fortunate. We can do better! We must do better!
With consumer education on exactly what good treatment entails, I hope we can improve medication outcomes across the board. With any health issue, we must be educated and pro-active. And, that is especially true with ADHD.
Now to the study:
Thanks to David Rabiner, Associate Research Professor at Duke University’s Department of Psychology Neuroscience, for explaining the study. In brief, the study finds poor treatment for children with ADHD. Evaluation and treatment guidelines established by the American Academy of Pediatrics, are frequently not followed.
Dr. Rabiner has long performed the excellent service of parsing the research around ADHD in his free newsletter, Attention Research Update. You can subscribe there at the link and read through the substantial archives once you are subscribed
I appreciate his clear writing style. Research terminology, however, can be complex for the average reader. This analysis might be “too much information” for some. So, here are the take-home points from this study (which, like all studies, has its limitations):
- Guidelines from the American Academy of Pediatrics on the evaluation and treatment of ADHD are frequently not followed.
- The careful monitoring of medication often does not happen to the degree that it should.
- The commonly co-existing conditions are routinely not identified.
- Parents are often part of the problem, in not following through with physician requests.
ATTENTION RESEARCH UPDATE
December 2014 – Pediatric care for children with ADHD – Discouraging new findings
By David Rabiner, PhD
Most children with ADHD receive their care from community-based pediatricians. [Note: “community-based” refers to physicians that you see in private practice, who might or might now be hewing to evidence-based treatment guidelines.]
Given the large number of school-age children who require evaluation and treatment services for ADHD, and the adverse impact that poor quality care can have on children’s development, it is important for children to routinely receive care in the community that is consistent with best-practice guidelines.
The American Academy of Pediatrics has clearly recognized this and published guidelines for the evaluation of ADHD back in 2000; this was followed by a set of treatment guidelines in 2001. You can find the complete paper in which these guidelines are presented here.
Based on data collected since then, these guidelines were modified in 2011. The complete text of the revised guidelines can be found here.
Below is a brief summary of the key elements from these guidelines.
Evaluation Recommendations for school-age children
- Youth ages 4 through 18 years who present to their primary care clinician with academic or behavioral problems and symptoms of inattention, hyperactivity, or impulsivity should be evaluated for ADHD.
- Diagnosing ADHD requires determining that DSM criteria for the disorder have been met. Making this determination requires information to be obtained from parents or guardians, teachers, and others. Clinicians should rule out any alternative cause of the child’s ADHD symptoms. You can find a review of DSM diagnostic criteria – these recently changed with the publication of DSM-V – here.
- ADHD evaluations should include assessment for other conditions that may co-occur with ADHD, including emotional or behavioral (eg, anxiety, depressive, oppositional defiant, and conduct disorders), developmental (eg, learning and language disorders or other neurodevelopmental disorders), and physical (eg, tics, sleep apnea) conditions.
Treatment recommendations for school-age children
- Treatment and management of ADHD should reflect that it is a chronic condition and may impact children’s development and functioning over many years. Parents need to be supported in consistently implementing treatments for their child over an extended period.
- Specific treatment recommendations vary by the age of the child.
- For children ages 4-5, evidence-based parent- and/or teacher-administered behavior therapy should be the first line of treatment. Stimulant medication may be prescribed if improvement is not significant and there remain moderate-to-severe disturbances in the child’s function.
- For 6-11 year old children, FDA-approved medications for ADHD and/or evidence-based parent- and/or teacher-administered behavior therapy are the front line treatments for ADHD; ideally, these treatments would be combined. The school setting is an essential context for any treatment plan.
- For adolescents, FDA-approved medications should be prescribed with the adolescent’s assent. Behavior therapy may also be prescribed and will ideally be combined with medication.
Note that for all ages, family preference is an essential element in determining the treatment plan. For older children and adolescents, their preference should also be taken into account.
- When prescribing medication, clinicians should titrate [adjust] doses of ADHD medication to achieve the maximum benefit with minimum side effects. Clinicians should inform parents and children that changing medication dose and/or medication may be necessary to determine the optimal medication/dose and that this can require several months.
- It is important for medication efficacy to systematically monitored at regular intervals so that adjustments can be made when indicated.
How well are these recommendations being followed?
The best data on this question comes from a study published online recently in Pediatrics [Epstein, et al. (2014). Variability in ADHD care in community-based pediatric practices. Pediatrics; originally published online November 3, 2014; DOI: 10.1542/peds.2014-1500.]
The authors recruited 184 pediatricians across 50 pediatric practices in Central and Northern Ohio for a study focused on improving community-based care for children with ADHD.
For each pediatrician, 10 charts for patients with an ADHD diagnosis code were randomly selected so that the assessment and treatment procedures received by those patients could be reviewed.
For each chart reviewed, the researchers documented the following:
- Presence of parent and teacher ratings of ADHD symptoms during the assessment.
- Documentation that the child met DSM criteria for ADHD.
- Documentation of whether ADHD medication was prescribed.
- Documentation that behavior therapy was suggested.
- Date of initial ADHD medication prescription.
- Dates of ADHD-related treatment visits or other contacts, e.g., phone, email.
- Dates of collection for parent and teacher ADHD rating scales.
- Evidence that DSM criteria for ADHD were met was documented in approximately 70% of patients’ charts. Thus, for nearly one-third of children diagnosed with ADHD, evidence that DSM criteria were met was missing.
- ADHD rating scales were collected from parents and teachers for roughly 56% of youth with an ADHD diagnosis. Presumably, pediatricians would have obtained information about ADHD symptoms from parents via other means, i.e., clinical interview. For teachers, however, the absence of rating scales in over 40% of the cases suggests obtaining information directly from teachers is frequently not done, as speaking with teachers on the phone is unlikely to have occurred.
- Pediatricians prescribed ADHD medication to roughly 93% of youth diagnosed with ADHD. Documentation that behavioral treatment was recommended, however, was present in only 13% of the charts.
- Follow-up contact (visit, phone call, or email) within 30 days of prescribing medication was documented in fewer than 50% of charts. Thus, for over half of youth prescribed medication, there is no indication that any information on the child’s response to medication was obtained during the 1st month.
- For youth on medication for at least one year, an average of 5.7 contacts occurred during the year; the majority of these were office visits, some were phone calls, and email was virtually never used. Contacts declined during the 2nd and 3rd year of treatment.
- With respect to monitoring treatment response with standardized ratings, this rarely occurred. Only 11% of charts had any evidence of parent ratings to monitor treatment response and less than 8% had teacher ratings within the 1st year of treatment. In addition, the average time between initiating medication treatment and collecting parent or teacher ratings was quite long – 396 days for parents and 362 days for teachers.
Summary and Implications
Results from this study are unfortunately clear and discouraging in that guidelines from the American Academy of Pediatrics on the evaluation and treatment of ADHD are frequently not followed.
The data indicate that many children are diagnosed with ADHD in the absence of clearly meeting DSM diagnostic criteria and that behavioral treatment is rarely recommended.
Although pediatricians are frequently initiating medication treatment – which has a strong evidence base – gathering data early in treatment to determine the child’s response is often neglected and systematically monitoring treatment response over time hardly ever occurs. As a result, many children are likely to be deriving significantly less benefit from such treatment than they would if the guidelines were routinely followed. This is because careful monitoring often reveals the need to adjust a child’s dose, and sometimes medication, to maintain optimal benefits. You can review an article on this issue here.
Although I don’t like to be pessimistic, it is worth noting that these findings may underestimate the degree to which AAP evaluation and treatment guidelines are failing to be followed. Thus, this study provided no data on whether pediatricians’ evaluations included the assessment of other conditions that often co-occur with ADHD so that a comprehensive treatment plan could be developed.
Given that such co-occurring problems are unlikely to be addressed by ADHD medication alone, and that behavioral or other psychosocial treatments were so infrequently recommended, it seems likely that co-occurring problems were often not addressed.
In the relatively small percentage of children for whom referrals for such treatment was made, no information on the quality of such treatment was available.
I think it is important not to interpret these findings as an opportunity to blame pediatricians for providing poor quality care to many children with ADHD. Certainly, the data indicate that there is ample room for improvement in terms of pediatricians following the AAP guidelines more consistently. However, pediatricians often have dozens (or in some cases, hundreds) of youth with ADHD in their practice and providing systematic follow up care and treatment monitoring in the context of a busy community-based practice can be extraordinarily difficult.
Even when rating scales are provided to parents and teachers so that a child’s treatment can be monitored, they are often not returned in a timely manner. Thus, the behavior of parents and teachers can undermine a physician’s efforts to provide care consistent with AAP guidelines despite his or her best efforts.
One thing that can and should facilitate physicians obtaining the information they need for both initial assessments and ongoing treatment monitoring is use of the internet. There are now several sites that enable parent and teacher behavior rating forms to be completed online and transmitted securely to physicians involved in a child’s care. I have been consulting with one such company that offers this service for the past year, Attention Point, and am perplexed that more professionals are not taking advantage of this type of service.
There are limits, of course, in what can be concluded from this study. In particular, all pediatricians were recruited from a specific geographic area, and generalizations to the care provided in other regions can’t be made with certainty.
The authors conclude by noting that “Although guidelines are an important first step, additional efforts, likely initiated or incentivized outside the practice, are required to improve the quality of care delivered in pediatric settings. Such efforts may take the form of quality improvement, clinical decision support tools, using pay-for-performance incentives,and/or partnering with mental health professionals.”
The authors themselves are involved in efforts to help pediatricians deliver higher quality ADHD care which you can learn about at here.
You can read the full text of the article summarized above here.
David Rabiner, Ph.D.
Dept. of Psychology & Neuroscience
Durham, NC 27708
(c) 2014 David Rabiner, Ph.D.
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9 thoughts on “Study Finds Poor Treatment For Children with ADHD”
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Thanks for sharing this. The links didn’t work for me but that may be mobile + nonstandard browser. I did find the site with the newsletter and I like the writhing style and information as well. There are 3 options to sign up and I don’t fit any of them (like most of my life lol) and I don’t see a contact form… I’m an adult with ADHD, I’m going to guess severe because I came to the exact same conclusion when I saw the new criteria – I meet the DSM-IV criteria so how could I possibly fall into any other category?
I ask my doctors questions that make them get out laptops and books and half of them teach lol. My latest question was “Do you have a book I can borrow that describes the glutaminergic system, in particular the roles of GABA / GABA analogues, Glutamate, phenylethylamine and pseudoPEA, both in the brain and peripheral nervous system and the differences between NMDARs and AMDARs and what they do, how catecholamines fit in and why our split system makes it so neuroleptics kill parasites but not us…to read while I’m in your office waiting until I’m ok to leave? I jokingly told someone their muscle building crap was missing phenylethylamine and quickly looked it up to see if I remembered the name right and learned about pseudoPEA and his stuff has taurine so it kinda does and you’re a more reliable source than random web pages.” The response I got was “the field is growing so fast any book is going to be wrong by the time it’s published so you need journals and you can find what you’re looking for with google scholar and dopamine is a good place to start… And teach me about it when you figure it out.” This is a guy who asks if I want the simple or complicated explanation (you can guess my answer) and knows an amazing amount of this kind of stuff and can answer MOST of my questions off the top of his head. How I got this deep into this given my other interests, I do not know. I’m fascinated by this stuff now and want to know how things work in general… I was one of those kids who didn’t need to pay attention in school and got As and Bs instead of straight As and saw that part and well I’m diagnosed and treated now, showed an interest in something (this actually describes 4 things) and have good people, some professionals, helping and encouraging me so I guess that’s part of it.
I like what I read here and on the site and I’m not a teacher or a parent, but I spend enough time in doctors’ offices that it’s a full time job for me and get paid a few cents a month for it kinda but I’m the guinea pig, not the one practicing… And I used to have credentials equivalent to an EMT but a little different… Not exactly someone who treats ADHD.
Do you know if it’s the same newsletter for everyone? I could probably figure out the professional one if there are different versions. I think the DSM-5 should be available to anyone who wants a copy, not $85… The older one is pretty much all online and I could find what I wanted, so my psych lets me flip through his when I’m in the waiting room, generally after my visit because I have to get it from him and I know he won’t leave it out and I’ve never been so careful with a book in my life lol. His stuff is pristine… I know exactly where I can leave my skateboard when I’m well enough to have it with me. But if they’re the same I’m just a big kid who has ADHD and an interest in the subject. So I don’t know which one to choose. I’m in that place where they all equally DON’T apply to me… Any advice?
Oh and the funniest part about that crazy question I asked is I was not yet fully awake after having a procedure done and the doctor was able to figure out what I was trying to ask and probably the only word I actually said was phenylethylamine, which may be slightly easier to say than glutaminergic, but how hard it is to remember and it’s usually referred to as just PEA so that was impressive. The problem wasn’t just getting my mouth to do what I wanted, it was finding the words to ask the question (asking for little red riding hood would’ve been just as hard) and THAT’S the word I come up with and spit out correctly? LOL.
The question actually came from looking up phenylethylamine to see if I had used the right word and finding methylphenidate as an example of pseudoPEA and that quick check turned into more reading than my eyes could handle because I’ve been saying i seem to respond well to meds that manipulate catecholamines in the right direction through the system that used glutamate and maybe we should look there and now there’s this AMDA part and Concerta acts on it…
If the professional newsletter is different, that’s probably right for me. I have help with things I don’t get. If he’s just keeping track of stats, I really am. none of the above…
Such complex questions! But exactly the kind we need to be asking.
You would have loved the Adult ADHD group last night, my group in Palo Alto. We spent two hours mostly talking about the various testing that can help to refine medication choices, eliminate offending allergens, etc. Two genetic tests in particular sounded promising.
My co-moderator learned that his nose is always stuffy at night if he eats broccoli or celery. The stuffy nose adversely affects his sleep, and thus ADHD symptoms intensify the next day. He also learned, before the 23andme testing got stripped down, that he doesn’t metabolize caffeine well. And that might explain why he can’t take more than 2-3 miligram Focalin (in the morning) or he’ll be up all night.
I’ll be testing two of the genetic kits myself, along with my husband. Look for report soon.
If you haven’t visited Chuck Parker’s site, I think you would enjoy it. He speaks your language. http://www.corepsych.com/
Sorry about the links in this piece. I will check and fix.
I think anyone can sign up for the newsletter.
Palo Alto sounds nice. A bit of a commute from NYC though. The group sounds awesome. Do you know which enzyme metabolizes caffeine? I’ve had a couple tests and the things being tested are for a reason and my insurance policy appears to have become “give no info and pay no money.” I have some messed up genetics and one where I’m waiting on my mom’s test and if she has anything in common with my dad, we’ll never know what the alleles add up to!
I’m nocturnal. That makes my ADHD worse. I lost a fight started by a door and can’t wear my blue blocking glasses and the med for sleep only works if I’m sleepy. The food – stuffy nose thing is interesting. I always have a stuffy nose and a deviated septum so bad they managed to fit a pediatric scope in one side with difficulty. And. That’s the good side. I’ve been putting off the surgery my ENT said would help me sleep until I’ve recovered from whatever pain pills did to me. It’s been over a year now and I’m still like when is normal gonna happen? I’ve been thinking soon tho… Anything that will help…
I bet you get some interesting results on that test. Can’t wait to compare to any overlap in what I know. That would be a fun group… Lets all compare “sensitive” data! It would be interesting.
I’ll check out that site. I’m having to find docs who are ok with me knowing more than them about some things and questioning everything… Sounds like it will be interesting.
I wish I could Skype in folks. But, you know, privacy and all.
My 11 year old son was diagnosed with ADHD almost 3 years ago, and stimulates have not worked with him. Currently at CHOP for ASD but that looks like its been ruled out as well. Told to find a behavior therapist but none in my area of Lansdale, PA that will accept insurance. At a loss, any thoughts or ideas?
As it says in this report, the co-existing conditions are often missed.
Without acknowledging and treating these conditions, the stimulants often will not work—and might make things worse.
And when it comes to psychiatrists examining the role of nutritional deficiencies and food sensitivities….wow, it’s almost non-existent.
I encourage you to read this book by Dr. Charles Parker:
Hi Gina, My son had a meds check up yesterday. The Dr. gave an rx for Vyvanse saying it would help him get an appetite. He was taking Metadate with no real affect and no weight gain. Everything I’ve read says Vyvanse will suppress his appetite.
Medications work best when they are targeting the condition they were developed for.
They also work best when other co-existing conditions are recognized and treated.
In other words, Vyvanse works very well for many people with ADHD.
It will work less well (and, for example, might suppress appetite) for people with ADHD who also have anxiety or depression that remains untreated.
That’s why some people with ADHD do best on two medications, because that is needed to treat both conditions.
So, it might suppress your boy’s appetite, or it might not. If it does, it might mean many things — it’s too high a dose, it’s not the right stimulant for him, or there is a co-existing condition (that is, anxiety, depression, bi-polar, etc.).
ADHD treatment is not a “slam dunk.” You don’t just “throw a stimulant at it,” as one psychiatrist described his approach to treating ADHD. 🙁
It takes a careful process of gradually increasing the dose, paying attention to benefits and side effects.