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Although
stimulant medication has been shown to be safe and effective for most
children with ADHD in numerous studies, fewer studies have been conducted in
which children's own feelings about taking medication are examined. How
parent and child perceptions of medication treatment compare has been
examined even less frequently. These are both important topics to
investigate, because child attitudes towards medications, and the match
between parent and child perceptions, can have potentially important
implications for the ultimate success of such treatment.
A study published in a recent issue of the Journal of Pediatric Child Health
provides important information on these questions (Jarman, E.D., &
Barker, M.J. (1998). Child and parent perceptions of stimulant medication
treatment in attention deficit hyperactivity disorder. Journal of Pediatric Child Health, 34,
288-292.) Participants in this study
were 102 children between the ages of 67 months and 179 months. The
majority (over 80%) had been diagnosed with ADHD, Combined Type (i.e. had
both inattentive and hyperactive/impulsive symptoms), about 16% had the
inattentive symptoms only, and about 1% had the hyperactive/impulsive
symptoms only. Ninety-three of the children were males and only 9 were
females. (The preponderance of males was not done intentionally but
reflected the referral pattern in the clinic from which participants were
drawn).
During the study, children received methylphenidate (MPH - the generic form
of Ritalin) or dexamphetamine (DEX - the generic form of Dexedrine) for 2
weeks in a randomly assigned order. Neither children, their parents,
nor the investigators were aware of which medication the child was receiving
at any time. At the end of each 2-week cycle, children were asked to
rate how they felt taking each medication on a 5-point scales ranging from
"much worse than usual" to "much better than
usual". They were also asked to rate how helpful the medication
was on a 5-point scale ranging from "not at all helpful" to
"very helpful". Parents were also asked to complete ratings
of their child's behavior during each period as well as ratings of any side
effects that they thought they observed. By collecting this data from
parents and children, the investigators would also be able to compare how
parent and child perceptions of response to medication compared – both in
terms of the medication's effectiveness and possible side effects.
The results below show how children reported feeling when taking either
Ritalin or Dexedrine. The numbers in the table represent the percentage
of children who responded as indicated. For example, the first entry
indicates that 4.9% of children indicated that they had felt much worse than
usual during the 2 weeks that they were taking MPH.
Child reported feeling: MPH
Dex
Much worse than usual 4.9 5.9
Worse than usual 7.8 12.9
About the same as usual 24.5 25.7
Better than usual
34.3 22.8
Much better than usual 28.4
22.8
Overall, therefore, almost two-thirds (62.7%) of children taking MPH reported
feeling better or much better than usual and 55.5% of children reported
feeling better or much better than usual when taking Dexedrine. Conversely,
12.7% of children reported feeling worse or much worse than usual when taking
MPH and 18.8% reported similar feelings when taking Dex. Although it
appears that children were somewhat more likely to report feeling better when
taking MPH than when taking Dex, these differences were not
significant. In other words, it is likely that the differences observed
were due to random factors rather than to a "true" difference in
how children feel when taking the different medications.
Children's ratings of how helpful they felt each medication was are shown
below.
Child's rating MPH Dex
Very helpful 45.1
38.6
Helpful 28.4 24.8
Not sure 14.7 26.7
Not very helpful 3.9 5.0
Not at all helpful 8.0 5.0
Overall, almost three-quarters of children (73.5%) reported that MPH was
either helpful or very helpful to them. The corresponding figure for
Dex was 63.4%. Although it again appears that more children found MPH
to be helpful than Dex, these differences were not statistically significant.
The authors next examined how parent and child response to medication
compared. This was done by looking at the number of children where both
child and parent rated the response to medication as being positive; the
number where both parents and child agreed that there was not a positive
response; and the number where parents and child disagreed about whether or
not there had been a positive response.
For MPH, parents and their child agreed on the child's response to medication
about 75% of the time (i.e. regardless of whether it had been positive or
not) and disagreed about the child's response about 25% of the time.
For Dex, parents and their child agreed about two-thirds of the time and
disagreed about one-third of the time. For both medications, about 75%
of the disagreements occurred when the parent(s) felt the child has shown a
positive response but the child did not agree. Thus, on both types of
medication, there was a substantial number of instances in which parents and
children disagreed about whether or not the child had benefited from the
medication.
The only predictor of whether children perceived themselves as benefiting was
the severity of side effects that were reported. Those children who did
not perceive a benefit to medication were the ones who had experienced a
greater number of side effects (unfortunately, it is not completely clear in
the article who - parent or child - is providing information about the side
effects experienced.) Apart from this factor, none of the other
characteristics of the child that were known - including gender, type of ADHD
(i.e. combined type vs. predominantly inattentive type), age, self-concept,
nor the presence of other emotional or behavioral problems) was related to
whether or not the child reported a positive response to the medication.
There is one important limitation to this study that needs to be recognized,
and that is the absence of a placebo that was administered in addition to the
2 active medications. It would have been very interesting to see how
children's reports about their response to medication compared to what they
reported when they were on the placebo. This is especially important in
relation to the children who reported feeling worse than usual when they were
taking medication. The percentage of children who reported feeling this way
was not insignificant, and it would be very interesting to know what
percentage would have reported feeling this way when they were taking a
placebo. The other point to note is that children's reports were
collected after only a 2-week period, and it is not uncommon for side effects
to dissipate over
time. Thus, it is quite possible that a smaller percentage of children
would have reported feeling "worse than usual" if this data was
collected several more weeks down the road.
Despite, these limitations - which the authors also acknowledge - I think
this is a very important study that has clear clinical implications.
The results of this study highlight that it is not uncommon for children to
report no response, or even to report a negative response, to treatment by
stimulant medication. Furthermore, this can occur even in situations when
parents and teachers may observe important improvements in the child's behavior
and functioning. In some cases, children who actually appear to have
benefited the most may have the strongest objections to continuing
medication.
This underscores the need to pay careful attention to children's feelings
about taking medication and their perception of how it is effecting them. One
reason this is so important is that it can certainly influence children's
compliance with the medication regimen being prescribed. A child who
finds him or herself feeling worse after starting on medication is unlikely
to want to continue taking it - even if parents and teachers perceive it to
be helpful to the child. When this child gets a bit older, getting
him/her to continue taking the medication if it still seems to be necessary
may be difficult if not impossible. Therefore, paying careful attention
to the presence of such negative feelings early on, and trying to deal with
them in a sensitive and respectful way if they are present, can help to avoid
a lot of difficulty and aggravation later on.
In my own experience, I have found it to be extraordinarily helpful when a
child is started on medication to make it clear that their feedback about how
the medication seems to be helping will be an important part of what goes in
to deciding whether it makes sense to continue taking it. I try to let
the child know that their opinion about the medication, along with opinions
from their parents and teachers will all be taken into account because all
are important. In this way, one tries to enlist the child as an active
and cooperative collaborator in the process of trying to determine whether
medication is an appropriate and helpful treatment. My own experience
has been that when approached in this way, children are generally less likely
to put up strong objections to giving medication a try. It is also my
impression that they are less likely to report negative effects of
medication, but this is not based on any systematic data. In any case,
trying to develop the feeling that this approach to treatment is something
that is done "with" the child as an important collaborator, rather
than something that is done "to" the child as a passive recipient
seems to make a lot of sense to me.
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