Although the behavioral, social, emotional, and academic functioning of children
and adolescents with ADHD has been examined
in many studies, there has been surprisingly
little work on how individuals with ADHD evaluate
their own quality of life.
How individuals with ADHD experience their
lives is critically important information
for developing a fuller appreciation of how
ADHD affects development. The absence of such
"first person" accounts of the disorder
is thus an important gap in our understanding
of the disorder.
What makes this especially important is
the ongoing perception among many individuals
that ADHD is simply a label that is inappropriately
attached to behaviors that many children
and teens commonly engage in. If this were
the case, i.e., if ADHD were really nothing
more than a medical label attached to normal
behavior, than those diagnosed with ADHD
would not be expected to experience a lower
quality of life than individuals without
the diagnosis. If ADHD describes a condition
that has a significant adverse impact on
individuals' lives, however, than we would
expect this to be reflected in reports of
lower quality of life among those with the
diagnosis.
What is the quality of life experienced
by adolescents with ADHD and how does this
compare to the quality of life experienced
by peers without ADHD or by those with another
chronic medical condition? This important
question was examined in a study published
recently in the Journal of Attention Disorders
- http://professionals.c.topica.com/maab7gKaa5L9Hbezh9Le/-
the only peer reviewed journal exclusively
devoted to ADHD and related disorders (Topplski,
T., et al., 2004. Quality of life of adolescent
males with ADHD. Journal of Attention Disorders,
7 , 163-173.)
Participants included 68 adolescents ages
11-18 with ADHD recruited from ADHD specialty
clinics, 116 adolescents without ADHD recruited
from the same communities, and 52 adolescents
recruited from specialty clinics for treating
mobility impairments. By including these
2 comparison groups, the researchers could
examine how quality of life in adolescents
with ADHD compared to adolescents both with
and without a chronic health condition.
Nearly all adolescents with ADHD were currently
being treated with medication. However,
only 14 were receiving some form of therapy
in addition to their medication treatment.
Adolescents with mobility impairments were
selected as a comparison group because among
adults, those with mobility limitations
generally report the lowest quality of life
when compared to "well adults"
and to adults with other chronic health
conditions. All participants with ADHD were
males because of difficulty obtaining an
adequate sample of females with ADHD. Participants
in the other 2 groups included males and
females.
MEASURES
To assess perceived quality of life, adolescents
completed the Youth Quality of Life Instrument.
This measure asks the adolescent to rate
their quality of life in 4 domains: social
relationships, sense of self, environment,
and overall quality of life.
The relationship domain assesses both family
relationships (e.g., "I feel I am getting
along with my parents or guardians")
and peer relationships (e.g., "I am
satisfied with my social life").
The self domain provides a perspective
on the adolescent's sense of who they are.
It is comprised of items that inquire about
adolescents' physical health, mental health,
belief in themselves, and how they feel
about themselves.
The environment domain includes items that
ask adolescents about multiple areas including
the quality of their school, their engagement
in interesting activities, their available
monetary resources, their sense of personal
safety, and their view of their future.
The general quality of life scale is comprised
of items pertaining to adolescents' overall
satisfaction with their lives including
the amount of enjoyment adolescents' experience
on a day-to-day basis, their feelings about
life being worthwhile, and their general
level of satisfaction with how their life
is going.
In addition to completing the quality of
life instrument, adolescents completed a
self-report measure of depressive symptoms.
This was done so that the researchers could
examine whether quality of life differences
were evident between adolescents in the
3 groups even after controlling for group
differences in depression. This is important
to do because adolescents who report more
depressive symptoms would also be expected
to report a lower quality of life.
Finally, parents completed the Conners
ADHD scales so that the adolescent's current
level of ADHD symptoms could be assessed.
The adolescents also completed a self-report
version of this instrument.
RESULTS
Before describing the quality of life results,
it is interesting to note that 55 of the
68 adolescents with ADHD had scores on the
parent version of the Conners ADHD scales
that fell in the atypical range. These adolescents
were excluded from the remaining analyses.
What is striking about this result is that
nearly all adolescents were being treated
with medication. This speaks to the fact
that although medication can be very helpful
in managing core ADHD symptoms when it is
administered in a systematic manner, and
when ongoing response to treatment is carefully
monitored, the results of medication treatment
in community settings may often fall short
of this standard. It is also worth noting
that although the combination of medication
treatment and behavior therapy is often
more helpful than medication treatment alone,
only 14 of the 68 adolescents were receiving
any intervention besides medication according.
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GROUP DIFFERENCES IN QUALITY OF LIFE RATINGS
-
Adolescents with ADHD reported lower quality
of life ratings than comparison adolescents
without ADHD or mobility impairment in every
single domain. In fact, the quality of life
ratings provided by adolescents with ADHD
were comparable to those provided by adolescents
with significant mobility impairments.
It is important to note that these results
were found even though levels of self-reported
depressive symptoms were controlled for.
This means that the lower quality of life
ratings reported by adolescents without
ADHD can not be explained by their having
higher rates of depression. It should also
be noted that although all adolescents with
ADHD were males, and adolescents in the
remaining 2 groups included females, the
exact same pattern of results was obtained
when only males from all 3 groups were included
in the analyses.
-
QUALITY OF LIFE DIFFERENCES IN ADOLESCENTS
WITH TYPICAL VS. ATYPICAL RATINGS OF ADHD
SYMPTOMS -
The authors also examined quality of life
differences reported by adolescents with
normal vs. atypical ratings on the self-report
ADHD scale. (As noted above, adolescents
who had parent ratings of ADHD symptoms
in the normal range were excluded from all
subsequent analyses). These analyses were
conducted to learn whether adolescents who
experienced themselves as having fewer ADHD
symptoms also experienced a higher quality
of life.
Results indicated that this was the case.
Adolescents with self-reported ADHD symptoms
in an elevated range reported a lower quality
of life than other adolescents with ADHD
in all areas surveyed. In terms of specific
items, these adolescents indicated that
they more frequently needed help with emotional/mental
health problems, that they were in a good
mood less often, and that their problems
were more likely to create problems in their
family.
-
SUMMARY AND IMPLICATIONS -
Results from this study are clear: despite
the fact that the adolescents with ADHD
were currently receiving treatment, they
reported a lower quality of life in specific
domains, and in general, compared to other
adolescents recruited from the same communities.
In fact, the quality of life they reported
was comparable to that reported by adolescents
with significant mobility impairments. When
adolescents own reports of the severity
of ADHD symptoms were taken into account,
those who reported less severe symptoms
reported having a higher quality of life
than those reporting more severe symptoms.
Results from this study demonstrate that
ADHD is not simply a diagnostic label that
is inappropriately assigned to individuals
engaging in "normal" behavior.
Instead, it is a constellation of symptoms
that are associated with significantly reduced
quality of life, even among individuals
who are receiving treatment. Thus, although
the disorder is often initially identified
by parents and teachers who may be struggling
to manage the child's behavior, ADHD not
only creates difficulties for the adults
in an adolescent's life; it creates difficulties
that adolescents experience as well.
One of the more disconcerting aspects of
this study is that despite the fact that
nearly all diagnosed adolescents were receiving
medication treatment, they still reported
a lower quality of life than other adolescents.
In part, this result may reflect the fact
that the researchers excluded participants
who received parent ratings of ADHD symptoms
that fell in the normal range, a group whose
symptoms were apparently being effectively
managed by treatment.
Nonetheless, the vast majority of adolescents,
i.e., 55 of 68 or 81%, provided quality
of life ratings. Clearly, this suggests
that many adolescents treated for ADHD in
community settings - in addition to continuing
to display elevated levels of ADHD symptoms
- also experience a lower quality of life
than their peers. This highlights the need
to evaluate adolescents' own perception
of their lives when assessing treatment
effectiveness, rather than focusing more
exclusively on parent and teacher ratings
of the child's behavior. Unfortunately,
this is an area that is typically not considered
in treatment research on ADHD.
Does ADHD actually directly cause individuals
to experience a lower quality of life? This
important question is really not possible
to answer based on the study reviewed here,
and it is possible that factors that often
go along with ADHD - rather than ADHD itself,
per se - were responsible for lower quality
of life in the adolescents who participated
in this study. Nonetheless, the fact that
ADHD is often associated with a lower quality
of life highlights the importance of attending
to this in the treatment of individuals
with ADHD.
It remains unclear whether effective management
of ADHD symptoms via medication and/or other
interventions necessarily translates into
adolescents experiencing a higher quality
of life. This question is not fully addressed
in the current study because adolescents
with normalized levels of ADHD symptoms
when assessed by parent behavior ratings
were excluded from the sample. However,
adolescents who reported less severe levels
of ADHD symptoms themselves did report higher
quality of life ratings, suggesting that
this may be the case. Unfortunately, adolescents
may not be the most accurate reporters of
their own ADHD symptoms, however, so this
important issue requires further study.
It is certainly reasonable to expect that
effectively treating core ADHD symptoms
would result in an improved quality of life
for adolescents with ADHD, but one cannot
assume that this would be the case. This
would be an important issue to pursue in
subsequent research.
How can the quality of life in individuals
with ADHD be enhanced? Certainly, as suggested
above, it is reasonable to hypothesize that
effective management of ADHD of symptoms
may result in a better quality of life.
Quality of life is also enhanced when children/teens
maintain good relationships with parents
and peers, experience success in school,
and participate in activities that are pleasurable
and in which they are successful. To the
extent that parents, professionals, and
educators can help children and teens with
ADHD have these kinds of experiences, they
are likely to contribute to their experiencing
a higher quality of life.
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