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What have
been the important trends during the past decade in the type of care that
children with ADHD typically receive in community settings? As you can imagine,
this is a difficult and complicated question to address. The answer to this
question is enormously important, however, for it will inform us about
critical gaps in the provision of appropriate care that parents need to be
aware of and that professionals and policy makers need to address.
A recent article from the Journal of the American Academy of Child and
Adolescent Psychiatry (JAACP) provides the most comprehensive information
yet available on this issue (Hoagwood, K. et al., (2000). Treatment services
for children with ADHD: A national perspective. JAACP, 39,
198-206). There is a tremendous amount of interesting data presented in this
paper, and I will try to highlight what seem to be the key findings below.
Data for this study come from two large national data bases that were
established in the 1980s and updated annually since then. These data bases
include representative samples of pediatricians, family physicians, and
psychiatrists who provide records of patient visits, diagnoses, and services
provided at each visit. (All information that could potentially identify any
patient is removed so that records remain anonymous.) By comparing the kinds
of services provided to children who had been identified as having a
diagnosis of ADHD, and noting the types of services that these children
received, trends in service provision over the recent past can be identified.
This is because these data are based on thousands of community physicians who
treated thousands of children and teens for ADHD. Even though the exact same
physicians did not provide data in different years, the sample is large
enough, and representative enough, to provide a good picture of what is
actually going on.
Results
The results of this study are fascinating. Here are some of the key findings:
* ADHD is being identified at a greater rate
The percentage of visits
where ADHD was identified has risen from .74% in 1989 to 1.9% in 1996. In
addition, for physician visits where a mental health problem was identified
as the primary reason for the visit, the percentage of children identified as
having important attentional problems increased from 41% to 60% during this
same period.
Note: Although these data indicate that ADHD is being identified at an
increased rate, 2 points are important to keep in mind. First, these data
tells us nothing about the accuracy of the diagnoses being made. Second, the
1.9% rate for physician identified ADHD in 1996 is still substantially below
actual prevalence rates that have been determined from a number of different
studies. Overall, therefore, it may be that many instances of ADHD continue
to go undiagnosed and untreated.
* Important changes are occurring in medication management
The percentage of visits for children with ADHD during which stimulants were
prescribed increased from about 55% in 1989 to about 75% in 1996. During that
time, there was a corresponding decline in the prescription of other
medications to treat ADHD - from about 15% in 1989 to about 7.5% in 1996.
Note: Because stimulant medication has been shown to be an effective
treatment for most children with ADHD, the fact that more children are
receiving it may reflect physicians' greater use of an empirically validated
treatment approach. Unfortunately, no data is available on the quality and
care of the medication treatment being practiced. As you may recall from the
results of the MTA study (gttp://www.helpforadd.com/mta.htm)(i.e. the largest
and most comprehensive treatment study of ADHD conducted to date) there is
good reason to believe that children treated with medication in the community
typically do not derive as much benefit as they might were careful and
systematic procedures followed.
I think it is encouraging that the rate of prescribing non-stimulant
medications for children with ADHD has been cut dramatically. These reason
for this is that non-stimulant meds are typically less effective and less is
known about their long-term safety. In the MTA study, however, almost none of
the children with ADHD required medications other than stimulants to
effectively manage their symptoms. This suggests that in many cases where
other meds are prescribed, it may be because careful efforts to obtain the
greatest possible benefits from stimulant medications were not used. Thus, the
7.5% figure may still reflect a greater
use of alternative medications than is really necessary.
* There has been an important decline in important follow-up care for
children with ADHD
Between 1989 and 1996, the percentage of visits where follow-up care was
recommended declined from 91% to 75%. Thus, as recently as 1996, 25% of
children identified as having ADHD are not scheduled for any follow-up care.
Note: I am very concerned about this finding. Because ADHD typically affects
children over many years, one of the most important aspects of treatment is
carefully monitoring a child's development over time. Just because a child's
symptoms are being managed effectively at one point in time does not,
unfortunately, mean that this will persist. Difficulties often emerge and
require that adjustments to a child's treatment be made. It is virtually
inconceivable that effective care could be provided in the absence of regular
and periodic follow-ups. (I've developed a simple tool called the ADHD
Monitoring System that can be very helpful for this purpose. You can learn
about this tool, and order it online if you wish, at https://www.helpforadd.com/monitor1.htm).
The authors also examined how the type of services that children with ADHD
received varied according to whether the provider was a pediatrician, family
physician, or psychiatrist. These results are based on the most recently
available data, which was from 1996.
The major findings here are that family physicians are more likely than the
other providers to prescribe stimulant medication for treating ADHD (i.e. 95%
vs. about 75% for pediatricians and psychiatrists). Conversely, family
physicians were less likely to utilize any type of formalized diagnostic
services in their visits with children identified as having ADHD (i.e. 33%
vs. 64% for pediatricians and about 80% for psychiatrists). Family physicians
were also less likely to recommend specific follow-up care (i.e. 46%
vs. 79% for pediatricians and 89% for psychiatrists). Family physicians were
also far less likely to provide any type of mental health/behavioral
counseling services during visits - only 7% of the time - than were
pediatricians (44%) or psychiatrists (67%).
Note: Although this study does not include any data that enables one to determine
the appropriateness of services being provided, it does appear that the care
a child receives depends greatly on the type of physician doing the
treatment. In particular, although family physicians were more likely to
prescribe stimulant medication, they were less likely to use any formalized
diagnostic services, to provide any type of counseling, or to even recommend
follow-up care. Even among pediatricians and psychiatrists, follow-
up care often failed to be recommended, and it seems highly unlikely that
this was because no such care would have been needed.
Overall, the authors conclude that in at least 50% of the cases, guidelines
for care that have been recommended by the American Academy of Child and
Adolescent Psychiatry for the treatment of ADHD are not being followed. This
is not good news.
Barriers to Care
The final issue examined in this study concerned what primary care physicians
(i.e. pediatricians and family physicians) perceived as the major obstacles
to making mental health referrals they may have felt were needed for their
patients with ADHD. Listed below are some of the barriers they identified
along with the % of the physicians surveyed who reported each barrier:
Barriers % reporting
Lack of specialists 64%
Difficulty getting appt. 64%
Restrictions on who could be referred to because of insurance company 48%
Authorization procedures 39%
Financial disincentives 35%
Burdensome paperwork 30%
The two most commonly reported barriers, mentioned by nearly two-thirds of participating
physicians, reflect the perceived lack of clinicians who are specially
trained to work with child behavior problems (e.g. child psychiatrists, child
psychologists, developmental pediatricians). The other commonly reported
barriers to care appear to be direct outgrowths of the restrictions placed on
mental health treatment by many of today's health maintenance organizations.
It is particularly striking to me that over one-third of the physicians
surveyed reported that financial disincentives limited the number of mental
health referrals they made for children. Although these data do not provide
direct evidence that the quality of care that children receive as a result of
HMO regulations has been compromised, it is certainly consistent with this hypothesis.
Summary And Implications
The most important implication of this study according to the authors is
as follows:
"Although at least 2 professional associations have written guidelines
or parameters of practice with these children (American Academy of Child and
Adolescent Psychiatry and American Academy of Pediatrics), and though
evidence-based reviews have been completed, these guidelines are not yet
influencing care as delivered in real-world practices."
To this conclusion I would add that these data strongly suggest that changes
in the insurance industry and the restrictions these changes have placed on
many physicians is likely to be having a negative effect on the quality of
care that many children with ADHD - as well as children with other types of
emotional and behavioral problems - receive.
To me, this highlights how important it is for parents to be as informed as
possible about how ADHD can affect children's development and what are the
best ways to promote the long-term success of children with ADHD. I truly
hope that your subscription to ADHD RESEARCH UPDATE is being helpful to you
in this regard.
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