Although many children are misdiagnosed with ADHD and treated with ADHD medications inappropriately, it is also true that a large percentage of children and teens with ADHD do not receive pharmacological treatment.  In fact, it has been estimated that only 25-50% of children with ADHD receive such treatment and that of those who do, the modal number of prescriptions filled each year is 4-8.  Because medication treatment can be helpful for many children - especially when used in conjunction with behavioral and educational interventions - it is important to understand why many parents choose not to pursue this option for their child.

This issue was examined in a recently published study involving over 850 families who had a child diagnosed with ADHHD by a primary care physician, but who either never started medication treatment or who discontinued such treatment within 3 months (Monastra, V.J. 2005. Overcoming the barriers to effective treatment for attention-deficit/hyperactivity disorder: A neuro-educational approach. International Journal of Psychophysiology, 58, 71-80). 

Parents were asked about the concerns that led them to decline medication treatment for their child or to discontinue medication shortly after starting it.  The results of this survey were quite interesting. 

The reason cited most often for not beginning medication treatment - reported by 92% of parents in the sample - was fear of medication side effects.  What is important to note about this is that when ADHD medication treatment is monitored carefully, it is relatively infrequent for a child to need to discontinue treatment because of adverse side effects.  Thus, many parents may pass up this treatment option for their child based on concerns about side effects that are in excess of their actual occurrence.  This suggests that physicians should devote more time to explaining possible side effects to parents, the likelihood that those side effects will occur, and how they can be dealt with if they do.

The second most frequently cited reason for declining medication treatment - reported by 90% of parents - was "discomfort using medication without direct testing of attention."  This is particularly important because current ADHD evaluation guidelines from the American Academy of Pediatrics and the American Academy of Child and Adolescent Psychiatry do not call for the routine use of any such procedure.  Instead, assessment guidelines call for a careful review of patient history, and the use of interviews - ideally with both parents and teachers - to determine whether the child meets ADHD diagnostic criteria.  In making this determination, the use of standardized behavior rating scales are also recommended.  Direct testing of attention using computerized tests, or direct measures of the child's brain functioning, are not.  In fact, guidelines from the American Academy of Pediatrics specifically state that "other diagnostic tests are not routinely indicated to establish the diagnosis of ADHD".

Although it is true that while such procedures may not be necessary to correctly diagnose ADHD, many parents lack confidence in an assessment process that is limited to interview, review of patient history, and behavior rating scales.  In fact, the absence of more "objective" data in the assessment process is apparently a frequent contributor to parents failing to follow through with treatment recommendations from their child's physician. Routinely incorporating such measure into ADHD evaluations could thus be an important way - as we will learn from the second part of this study - to enhance compliance with recommended treatments.

These two reasons - concerns about side effects and an assessment process that lacked "objective" procedures - were far and away the leading reasons that parents chose not to try medication with their child.  What about parents who were willing to initiate such treatment but who discontinued it within 3 months.  In this case, the most frequently cited reasons were the development of side effects - reported by 49% of parents - and continued problems at home or school despite medication - reported by 48%. 

This is important information for several reasons.  First, as we will see below, side effects that may be common occurrences early on in medication treatment frequently dissipate over time.  When families are unaware of this fact, however, many may opt to stop a treatment that is helping their child. Second, even when children are started on  the best medication and dose for them, it is common for symptoms and difficulties to reemerge over time.  When this occurs, however, adjusting the dose and/or medication prescribed can often result in better management of core symptoms. If families are not educated in advance about this possibility, however, many will choose to end their child's treatment based on the assumption that it is no longer being helpful.  (For additional information on the frequent need for treatment adjustments, please see a prior issue of Attention Research Update that can be found at www.helpforadd.com/2001/march.htm


STUDY 2

Results summarized above highlight that concerns about side effects and evaluations that do not include objective assessment procedures keep many parents from beginning medication treatment for their child. The emergence of side effects and continued problems despite the use of medication are key reasons for discontinuing such treatment within a short time period.  Addressing these issues could thus result in more parents being willing to try their child on medication and to continue such treatment beyond several months. 

A follow-up study involving 658 families with a child who had been diagnosed with ADHD by the child's primary care physician, and who had declined or discontinued medication treatment, describes an attempt to do just that.  None of these families had participated in the survey study summarized above.

To address parents' desire for objective measurements as part of their child's evaluation, a computerized test of attention and a quantitative electronencephalgraph (QEEG) were administered to each child.  Results from these assessments were reviewed with parents to provide objective, concrete data about their child's attention difficulties, as well as to help them understand the biological underpinnings of those difficulties. (To review studies on the use of QEEG to assist in the diagnosis of ADHD, please see http://www.helpforadd.com/2001/april.htm and http://www.helpforadd.com/yr2000/april.htm ).

To further address parental concerns, parents were given a manual that included extensive educational information about the causes of ADHD, the rational for using medication, possible medication side effects as well as strategies for reducing them, tips for improving diet, sleep, and exercise habits, and the importance of adequate support and accommodation at school.  The manual also presented strategies for addressing common difficulties that often persist even after medication treatment is underway.

A detailed report of assessment findings along with a comprehensive set of treatment recommendations were provided to parents, as well as to each child's physician and school.  For children where assessment results continued to support an ADHD diagnosis, medication treatment was part of these recommendations.  Prior to beginning any such treatment, however, an evaluation to rule out possible medical reasons for the child's ADHD symptoms (e.g., allergies, anemia, sleep apnea, vitamin or mineral deficiencies) was recommended.  Because QEEG results may be helpful in predicting response to different types of ADHD medications (more research in this area is needed), recommendations for stimulant vs. non-stimulant medications were made based on each child's QEEG profile. 


RESULTS

Whether parents chose to pursue the treatment approach recommended, including medication treatment, was, of course, up to each parent.  The researchers were interested in whether providing parents with objective measures of their child's attention difficulties, along with educational information about the causes of ADHD and the rational for medical treatment, would impact parents' willingness to initiate and sustain medication treatment for their child.  As noted above, all parents had previously not followed recommendations for medication treatment made by their child's physician, or had discontinued such treatment within 3 months.

Follow up information was collected from parents at 6 weeks, as well as at 6, 12, and 24 months.  At 6 weeks, approximately 70% of parents had begun medication treatment for their child; the primary reason for not beginning treatment was the inability to schedule and complete the recommended medical evaluation.  Over 20% of parents continued to cite fears of using medication, and relatively few - only 3% - cited a desire to try alternative treatments before beginning medication.

By 6 months, over 95% of parents had initiated medication treatment for their child. Of particular note is that over 95% of children continued to be receiving medication treatment at the 2-year follow up. 


SIDE EFFECTS

Information on side effects was also obtained at each follow-up assessment.  At the 6-week time point, reports of side effects were relatively common.  In fact, over 90% of parents reported observing appetite loss and sleep difficulties, over 80% reported that their child had lost at least 5 pounds, and over 50% reported that their child was showing increased irritability.  Increased symptoms of depression were reported by 25%.  Such side effects are what lead many families to discontinue their child's medication therapy.

By 6 months, reported side effects had declined by approximately 50% and by the 2-year follow-up, the only side effect that continued to be reported by 15% of parents was appetite suppression. Thus, parents clearly observed a substantial decline in medication side effects for their child over time.


SUMMARY AND IMPLICATIONS

It is important to stress that this study should not be construed as supporting the use of medication treatment for all children with ADHD.  This continues to be a decision that should be made by each parent in consultation with a qualified health care professional.  In fact, as noted above, the author of this study has done some of the best treatment research on neurofeedback that I am aware of and advocates a comprehensive approach that includes behavioral and academic interventions, as well as attending to the importance of nutrition, exercise, and sleep.  In addition, as the author clearly notes, this study did not examine long-term outcomes for children, so information on the effectiveness of long-term medication treatment cannot be gleaned from this work.

What is important about this study - in my view - is the clear information it provides about some of the key reasons why parents decline to pursue medication treatment for their child.  For many parents who decline to follow such a recommendation from their child's doctor, concerns about medication side effects are a critical issue.  As this study indicates, however, educating parents about possible side effects along with strategies for addressing them, can result in many parents being willing to begin and sustain such treatment.  It was also noteworthy that the side effects which parents observed in their child declined substantially over time.

The results also highlight how important it is too many parents for objective assessment procedures to be part of their child's ADHD evaluation.  Ninety percent of parents who declined medication treatment cited the absence of such procedures as one of their reasons for not following the doctor's recommendation.  Thus, even though many physicians and ADHD experts may argue that procedures such as computerized attention tests of QEEG are not necessary to routinely include in ADHD evaluations, the objectivity provided by such procedures is something that many parents desire.  This seems critically important for professionals to keep in mind, as results from this study  clearly suggest that this may be important in enhancing parents' willingness to follow through with recommended treatments for their child.