What works for ADHD? Here’s what parents say

What works for ADHD? Here’s what parents say

Consider how research support for ADHD treatments are typically established. The ‘gold-standard’ approach would be a randomized-controlled trial in which children with ADHD are randomly assigned to the treatment or control group. The treatment, whatever it happens to be, would be carefully implemented in a research-based protocol. If possible, children in the control condition would receive a placebo treatment so that nobody is aware of which participants were treated and which were not. Measures collected on children before and after treatment would be compared so the researchers could determine whether those getting the real treatment showed improvement relative to control participants at a level that was unlikely to have occurred by chance. If this were the case, empirical support for the treatment would have been obtained. Were these findings replicated in a second study, one could be confident that the treatment is likely to yield positive effects for children with ADHD.

While this approach is valuable for establishing the scientific support for any treatment, it is not without shortcomings as a guide for parents seeking treatment for their child. There are several important reasons for this.

First, although the research-supported treatment may be available in the community, it may not be implemented in the same way as in the research studies. For example, the rigor with which medication treatment is initiated and monitored in community settings is often quite different from what occurs in clinical trials. The same could be said for behavioral therapy and probably for any other treatment approach. Thus, the results obtained in community settings may differ from what the research reports.

Second, the outcomes collected in research studies may be narrower than what parents care most about. For example, while documenting that a particular treatment significantly reduces core ADHD symptoms is important, parents may care more about how treatment affects their child’s functioning more broadly. Will it help their child do better at school, be more successful socially, and get along better with siblings and parents? Many studies do not consider this broader range of outcomes.

Third, outcomes in clinical trials often do not include longer-term follow-up of initial treatment effects. It is also relatively uncommon for treatments to be studied over extended periods so the duration of benefits can be reliably assessed. For parents concerned about the long-term impact of treatment for their child, the available data is more limited that one would like.

How do different treatments really work in the community? – While not discounting the value of carefully-controlled trials to establish the research support for different ADHD treatments, it is also important to examine how different treatments work as perceived by parents who seek treatment for their child in their community. What do parents who have tried different ADHD treatments for their child say about how helpful they found them to be? This provides an important complement to the published clinical trials data, and can help guide parents’ treatment choices for their child.

For this reason, I was pleased to learn of the survey study recently published by ADDitude Magazine that summarized reports from nearly 2500 parents about the treatments they had tried with their child and how effective they perceived them to be. Parents were asked to report on all the treatment strategies they were using currently or had used in the past. You can find a complete summary of the survey at www.additudemag.com/adhd-treatment-options-caregivers-adults-survey-results. At this page, you will also find results from adults with ADHD reporting on their own treatment. Below is an abbreviated summary of some key findings for children.

How often are different treatments used? – Despite being infrequently recommended by physicians and other clinicians, a wide-range of non-medical treatments were being used by parents for their child. Below are data on 10 different treatment approaches in descending order of frequency. The percentages sum to more than 100% because many parents were using multiple treatments with their child and/or had used different treatments in the past.

67% – Prescription medication
37% – Exercise
36% – Vitamins, minerals, or supplements
29% – Diet/nutrition plan
26% – ADHD coaching/counseling
13% – Mindfulness meditation
10% – Behavior therapy/parent-training classes
5% – Neurofeedback with a clinician
3% – Home-based brain training

It is interesting to consider this data in relation to the current research support for different ADHD treatments. At this time, medication and behavior therapy have the strongest evidence base and are recommended in treatment guidelines from the American Academy of Pediatrics and the American Academy of Child and Adolescent Psychiatry. It is thus noteworthy that many treatments with less support are used more often than behavior therapy. This may reflect challenges that parents face in accessing this treatment in their community.

How well do parents feel different treatments work? – As noted above, research from well-conducted treatment studies are critical to establish the scientific validity of different approaches; however, what parents say about how different treatments actually work is also important and may be useful in guiding parents’ decisions about treatment.

Below is the percent of parents who reported that each treatment type was either ‘Extremely or Very Effective‘ in rank order of perceived effectiveness.

49% – Exercise
41% – Prescription medication
33% – ADHD coaching/counseling
33% – Behavior management/parent-training classes
30% – Neurofeedback with a clinician
27% – Mindfulness meditation
24% – Diet/nutrition plan
24% – Home-based brain training
14% – Vitamins, minerals, or supplements

Below is the converse of this data, i.e., the percent of parents who found each treatment ‘Not Very or Not At All Effective‘.

5% – Exercise
13% – Behavior management/parent-training classes
19% – ADHD coaching/counseling
19% – Mindfulness meditation
26% – Prescription medication
27% – Diet/nutrition plan
27% – Neurofeedback with a clinician
33% – Home-based brain training
42% – Vitamins, minerals, supplements

Several aspects of these results are noteworthy.

First, exercise was the ADHD treatment approach that parents were most likely to see as effective and least likely to be see as ineffective. What parents perceive about exercise is ahead of the current science, as research on exercise as an ADHD treatment remains limited; I expect we will begin seeing a number of studies on this topic appearing over the next several years.

Second, although medication is widely regarded as the ADHD treatment with the strongest research support, only a minority of parents felt it was very effective for their child. And, 26% of parents felt it was not effective at all. This highlights the limitations of even well-researched treatments for ADHD.

Third, no treatment was regarded as very effective by a majority of parents and all treatments were rated as highly effective by at least some parents. This highlights the challenge parents face in obtaining effective ADHD treatment for their child, i.e., there is no single approach that is likely to be seen as very effective for the majority of children. On the positive side, there are a number of approaches that many parents found to be quite helpful to their child. This suggests although the initial treatment(s) implemented not be sufficiently helpful, other approaches may still yield results that parents believe are worthwhile. Accessing those treatments can be challenging, however, and many of these treatments may not be covered by insurance.

Summary and implications – Results from this survey provide a useful complement to evidence from carefully-controlled clinical trials of ADHD treatment by offering data on how parents who pursue different ADHD treatments for their child experience the impact of those treatments. It is discouraging that no single treatment was felt to be very effective by most parents, but also encouraging in that a range of different treatments were reported to work well by some parents. The challenge, therefore, is finding a treatment approach – or combination of treatments – that is most effective for individual children. That is not easy and is highlighted in this quote from one of the survey participants:

“It is overwhelming at times to try to do all of these treatments,” wrote one caregiver. “I feel parents are on their own… We would have benefited from an interdisciplinary team including pediatrician, therapist and teacher meeting once a year at least and have someone coordinate with us throughout the year to check in.”

There are limitations to a survey study like this that are important to recognize. First, this is not a nationally representative sample of parents but a convenience sample comprised of parents who chose to complete the survey. These may be parents who are better informed about ADHD and its treatment than the overall population of parents raising a child with ADHD. How this may have affected the results is unknown.

Another challenge is that it is not possible to know the details of the treatments actually provided. A benefit of controlled clinical trials is that the treatment is clearly specified, i.e., you know with confidence what treatment actually entailed. That is not true for a study like this. As an example, results indicate that 49% of parents felt exercise was very helpful to their child. What exercise-based interventions entailed is unknown, however, and would almost certainly be highly variable across children. The same would be true for any of the treatments that were rated.

A final issue is that parents’ reports about the effectiveness of their child’s treatment may be biased because parents who devote time and money for a particular treatment may be inclined to view it as effective, even if ‘more objective’ outcome data would not support this. This is why clinical trials go to great lengths to obtain information on treatment outcome from individuals who are ‘blind’ as to whether study participants are in a treatment or control group. While this is an important concern, discounting parents’ perceptions of treatment response is problematic given their intimate knowledge of their child. And, as noted above, there was not a single treatment rated as very effective by a majority of parents; this suggests that parents are discerning in their ratings of treatment effectiveness and unlikely to be biased towards seeing anything they try as beneficial.

In summary, results from this survey provide useful information to parents seeking effective ADHD treatment for their child that complements what has been learned from research-based clinical trials. In particular, the findings highlight that no treatment as currently offered in community settings is likely to produce benefits that most parents will be satisfied and that persistence in finding what works best for one’s child may often be required. This, unfortunately, can be difficult for a variety of reasons. As indicated above, you can access a more complete summary of the findings, including reports from adults with ADHD on their own treatment experience, at www.additudemag.com/adhd-treatment-options-caregivers-adults-survey-results

Sincerely,

David Rabiner, Ph.D.
Research Professor
Dept. of Psychology & Neuroscience
Duke University
Durham, NC 27708

(c) 2017 David Rabiner, Ph.D.

—With Permission—