Measuring Quality of Life in Children

With Attention-deficit/Hyperactivity Disorder

and Their Families
Development and Evaluation of a New Tool
Jeanne M. Landgraf, MA; Michael Rich, MD, MPH; Leonard Rappaport, MS, MD
Objective: To psychometrically evaluate a newparent-
completed questionnaire that measures the effect of at-
tention-deficit/hyperactivity disorder (ADHD) on the ev-
eryday well-being of children and their families.
Setting: Using a mail-out/mail-back method, the
sample was drawn fromthe registry of an outpatient de-
velopmental and behavioral program of a large tertiary
pediatric hospital. All children received medication for
ADHD.
Participants: Responses were received for 81 children
of whom60 (74%) were boys. An even split of question-
naires was returned for children with ADHD primarily
inattentive (50%) and ADHD combined (50%). The
condition of 70 patients (86%) had been diagnosed for
1 year or longer; 69 patients (89%) reported receiving
medication.
Main Outcome Measure: The ADHD Impact Mod-
ule, HealthAct, Boston, Mass, developed with input from
families, measures the effect of the disorder on the childs
emotionalsocial well-being (Child Scale, 8 items) and
the family (Home Scale, 10 items).
Results: The scales exceeded standard criteria for item
convergent and discriminant validity. No floor effects and
minimal (2%) ceiling effects were observed. Cronbach
was 0.88 and 0.93 (Child and Home Scales), respec-
tively. Raw scale scores are transformed on a 0 through
100 continuum; a higher score indicates more favorable
findings. Statistically significant differences (P.000) were
observedfor ADHDinattentive vs ADHDcombinedonboth
scales (Child, 65.26 vs 48.86; Home, 72.79 vs 51.26). Bet-
ter success at home scores were reported by parents of
ADHD inattentive children (Child Scale, 62.12 vs 47.36,
P=.00; Home Scale, 70.58 vs 47.01, P=.000).
Conclusions: The ADHD Impact Module meets strin-
gent psychometric standards. Further validation is re-
quired, but current evidence suggests it is a promising
new questionnaire.
Arch Pediatr Adolesc Med. 2002;156:384-391
A
TTENTION-DEFICIT/hyper-
activitydisorder (ADHD) is
one of the most common
pediatric conditions, yet its
diagnosis, treatment, and
outcomes remain complex and subject to
controversy.
1
The prevalence of the disor-
der among school-aged children is esti-
mated to be between 3%and 11%
2
and has
been found to affect between 3 to 6 times
as many male as female subjects.
3
The disorder usually evidences itself
in settings other than the clinicians office.
Thus, a multimodal approach to diagno-
siswhich includes an array of clinical
evaluations andempirical data about the fre-
quency and intensity of symptoms from
parents, teachers, and others with varying
levels of training in child development and
behavioris often used.
4
While this ap-
proachhas resultedinwarnings about mis-
diagnosis and overmedication,
5
review of
the literature has demonstrated little basis
for this concern.
6
According to the Diagnostic and Sta-
tistical Manual of Mental Disorders, Fourth
Edition (DSM-IV), diagnostic criteria in-
clude early onset (usually before the age
of 7 years) of continuous symptoms of in-
attentionand/or hyperactivity, resulting in
clinically significant social, academic, or
occupational impairment.
7
The DSM-IV
further divides ADHD into 3 subtypes:
predominantly hyperactive-impulsive,
predominantlyinattentive, andcombined.
Diagnosis is often made by means of stan-
dardizedratings scales,
8,9
symptomcheck-
lists, orstructuredinterviews.
10
Thereiscon-
siderablecomorbidityof thedisorder, most
commonly with learning disorders, con-
duct disorder, and oppositional defiant
disorder.
11-13
Inadditionto social andacademic im-
pairment, significant decrements inhealth-
ARTICLE
From HealthAct (Ms Landgraf),
the Divisions of
Adolescent/Young Adult
Medicine (Dr Rich) and
General Pediatrics
(Dr Rappaport), Childrens
Hospital, and the Department
of Pediatrics, Harvard Medical
School (Drs Rich and
Rappaport), Boston, Mass.
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related quality of life have been reported for children with
attentional problems andhyperactivity relative topeers.
14-18
However, the effect of the disorder on the everyday func-
tioning and well-being of children remains largely un-
explored in clinical practice.
19
Current practice suggests that children with
ADHD benefit from stimulant medication
20,21
and that
effective treatment often requires a comprehensive,
multimodal approach that includes behavior modifica-
tion. Significant variation has been observed in clini-
cians choices and combinations of therapeutic
agents.
22,23
Yet, much current research is still focused on
the objective measurement of symptoms
24
rather than
outcomes of treatment.
METHODS
MODULE DEVELOPMENT AND DESCRIPTION
A multistaged approach was used in the development pro-
cess of the ADHD Impact Module (AIM), HealthAct, Bos-
ton, Mass. After the current literature was reviewed, inter-
views were conducted with 3 families, 2 clinicians (M.R.
and L.R.) treating children with ADHDat a nationally rec-
ognized pediatric hospital, and 1 licensed educator who was
the director of a community-basedsupport programfor chil-
dren with behavioral issues and their parents.
The interviews lasted 40 to 90 minutes and were con-
ducted independently by the principal author (J.M.L.) who
is trained in psychometrics and questionnaire design, eth-
nomethodology, and observational research.
25-28
These in-
terviews build on the authors previous observational and
measurement workwhendeveloping the ChildHealthQues-
tionnairea general quality-of-life measure for children that
has been evaluated for use in ADHD.
14-18
Previous experi-
ence included lengthy observations at 2 ADHD clinics, in-
terviews with 2 recognized clinical experts, and 2 home ob-
servations and interviews with families.
To further our current understanding of the effect of
ADHD on children and their families, observations were
made at a family home and one-on-one conversational in-
terviews were held with 2 fathers, 2 mothers, an 11-year-
old boy with ADHD, and his 10-year-old sister. In describ-
ing everyday life, the families and childrenidentified aspects
of home life that are significantly influenced by ADHD, such
as following throughwithhomework and chores, the childs
ability to cope with everyday hassles, the child not getting
invited to sleepovers, parents feeling constrained about en-
tertaining others in their home, and overall how the fam-
ily is managing.
The Likert methodof summatedratings,
29
whichis based
on testable scaling assumptions, was used in the design of
the AIM. This method uses a graduated response con-
tinuum(eg, a lot to not at all). Items were writtento cor-
respond to each of the 2 principal constructs that emerged
from discussions with familiesinfluence on the child and
influence onthe parent-family. Whenever possible, items were
constructedusing the phrasing providedby the families such
as those identified in the previous paragraph.
The AIM is composed of 2 core multi-item scales: the
Child Scale and the Home Scale were specifically con-
structed to capture the effect of ADHD on the child and the
quality of life at home, and 9-descriptor items to assess treat-
ment status and history and other related background infor-
mation. The Child Scale consists of 8 items that measure the
well-being of the child(eg, childdoes well following through
with homework, feedback from teachers has been positive,
and my child seems comfortable withhowthings are going).
The Home Scale consists of 10 items that assess the influ-
ence on the family-parent (eg, my childs ADHDlimits what
we can do as a family, my childs ADHD has added stress to
our home life, and I feel tired and worn out).
The 9 descriptive items include (1) 1 itemto determine
the childs medication status during the 2 weeks prior to
completionof the AIM; (2) 1itemtogauge the frequencywith
which a parent may experience success at home in help-
ing their child refocus or regain self-control; (3) 4 items to
assess parental attributions regarding ADHD (is it a health
issue, discipline issue, parenting issue,or behavioral issue);
(4) date of diagnosis; (5) howlong the child has beenreceiv-
ing medication for ADHD; and (6) whether the child or the
family have attended anADHDsupport group. Sample items
from the AIM are shown in Table 1.
The core AIMscales were evaluated for readability and
ease of completionusing the Flesch-Kincaid method, a gold-
standard reading comprehension program.
30
Results indi-
cated that the they can be completed by individuals with
at least a fifth-grade reading level and would be easy to read
by 75% of the readers at this level.
The AIMwas reviewed by the 2 clinical authors (M.R.
and L.R.) both of whomactively treat children with ADHD
at a nationally recognized pediatric hospital. In addition,
2 families of children with ADHD were asked to complete
the AIMto determine if there were problematic items. Rec-
ommended enhancements and clarifications were incor-
porated. Questionnaire development guidelines suggest that
typically it takes someone 30 to 45 seconds to complete each
multiple-choice or true-false item.
31
Once finalized, the AIM
was piloted in a sample of families of children who had been
diagnosed with ADHD by a trained clinician using stan-
dard diagnostic DSM-IV criteria. Based on the pilot study
results and the aforementioned guidelines, we estimate that
most people can complete the AIM in 4 to 7 minutes.
SAMPLING STRATEGY
Our convenience sample was drawn from a patient regis-
try of children who had or were receiving stimulant medi-
cation treatment for ADHD from an outpatient develop-
ment and behavioral program of a large pediatric hospital
in the greater Boston area. All children in the registry had
been formally diagnosed with ADHD by a team composed
of a developmental behavioral pediatrician, a PhD-level psy-
chologist, and an MA- or PhD-level educational specialist.
The standard diagnostic process used in the clinic in-
cludes extensive educational, neurodevelopmental, andpsy-
chological testing to identify alternative causes of and/or
comorbidities of activity and attention problems. Each child
also receives a physical examination and vision and hear-
ing tests. Parental histories were obtained separately by the
psychologists and the pediatrician (L.R.). The Clinical At-
tention Problems Scale measures the frequency of activity
and attention by asking the parent and teacher to respond
to a series of 12 statements and their applicability to their
Continued on next page
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While symptom checklists are useful in standard-
izing diagnoses and following core symptoms, they are
a crude measure for evaluating the effect of treatment on
the everyday lives of families and children with ADHD.
Treatment may be able to reduce the frequency of re-
lated symptoms and thereby bring a welcome reprieve
from the problems of living with ADHD. However, this
may not necessarily result in an improvement in the qual-
ity of life at home, at school, or with peers. Rigorous mea-
sures are needed to document whether therapeutic in-
terventions for ADHD are improving the quality of
everyday life for these children.
For many common childhood conditions, progress
can be measured using objective tools like a spirometer
child inthe morning and afternoon. Response options range
from not true, somewhat or sometimes true, very of-
ten, or often true).
32,33
Consensus of diagnosis was es-
tablished by the full teamusing DSM-IV criteria and evalu-
ating results of the extensive evaluations. The institutional
review board of the hospital approved the project under
their quality improvement program.
The eligible patient population consisted of 259 fami-
lies living in Rhode Island, Massachusetts, and NewHamp-
shire. Aletter preparedandsignedbytheclinicdirector (L.R.)
andapostage-paidbusinessreplyenvelopeaccompaniedeach
questionnaire. To maintain confidentiality, per the terms of
institutional reviewboard approval, there was no follow-up
tononrespondents. Nofamily identifiers were usedandvol-
untarycompletionof theformconstitutedinformedconsent.
ANALYTIC METHODS
Scores for the Child Scale and the Home Scale were com-
putedseparately by summing the items withineachscale and
deriving an overall mean score. The raw mean scale score
was then transformed on a 0 through 100 continuum with
higher scores indicating less negative influence or better func-
tioning and well-being. Using standard scoring conven-
tions, a higher score is more favorable. Multitrait analysis
was used to assure that grouping the items into the 2 sepa-
rate scales as we did was appropriate. All computations were
performed using the Revised Multitrait Analysis Programfor
a disk operating system.
34
Multitrait analysis is a confirma-
tory factor analytic method that was originally used in the
construction of achievement tests and has been applied to
the development of patient-basedmeasures inthe healthcare
field since the early 1970s.
35
It has been used as the method
of choice in the evaluation of a wide array of published in-
struments.
35
As mentioned, items were written and grouped a priori
to correspond specifically to 2 key conceptsinfluence on
the childandinfluence onthe parent-family. Multitrait analy-
sis was chosen as the principal method of analysis because it
allowedus to test the strengthof our scaling assumptions (ie,
grouping of items). This method extends traditional factor
analysis by examining the discriminatory power of items in
addition to their convergence to confirm that the hypoth-
esized sets of items (ie, scales), indeed, measure separate and
unique constructs. In other words, one might expect to see
a relationship between items from the Child Scale and the
Home Scale, but the correlationacross items fromthe 2scales
should be low enough to support grouping them as ex-
pected to derive 2 independent scale scores. Multitrait analy-
sis provides a reliable way to assess the strength of these cor-
relations. Further, it is recommended that tests of scaling
assumptions shouldbe conductedbefore newitems or scales
are relied upon in formal studies.
35(p4)
Specifically, the Revised Multitrait Analysis Program
performs tests of scaling assumptions using the following
criteria. First, each item in a hypothesized scale must be
substantially linearly relatedto the underlying concept being
measured (tests of item internal consistency). An item-
scale correlation, corrected for overlap, of 0.40 or above
has been recommended.
36
Second, each itemshould correlate significantly higher
with its hypothesized scale than with other scales in the
same matrix (tests of item discriminant validity). To sat-
isfy the item discriminant validity criterion, the correla-
tion between an item and its hypothesized scale must be
significant. The convention, based on an SE of 0.04, is a
magnitude of 2 SEs higher than its correlation with other
scales.
37
For new scales, however, it is acceptable to ex-
tend the criteria for tests of discriminant validity such that
a success is counted if the correlation of an item to its
hypothesized scale was at least 1 SE higher than correla-
tions with other scales.
36
Reliability is a function of the average correlation
among items. Since it is possible for a measure to appear
quite stable over time, but not be internally consistent, test-
retest is not recommended as a method of choice to esti-
mate reliability.
38
Thus, the internal consistency reliabil-
ity for the 2 AIM Impact scales were estimated using
Cronbach coefficient.
39
It has been noted that scales with
reliabilities of at least 0.70 and higher are sufficiently re-
liable for use with group comparisons.
40
Reliability esti-
mates of 0.90 or higher are suggested for use at the patient-
specific level.
37,39
The coefficient represents the average
of all possible split-half reliability estimates adjusting for
scale length and has been shown to approximate test-
retest estimates when scaling assumptions are met.
41-43
Respondents had to have answered at least half of the
items for each of the scales to be included in the analysis.
Given that this was a newly developed measure and we were
evaluating its psychometric properties, if a patient did not
complete more than half of the items per scale, their en-
tire form would be excluded from any analysis.
The discriminatory power of an instrumentits abil-
ity to discriminate within and across groupsis deter-
mined in part by the distribution of scores observed for a
given sample. The more scores are spread across the con-
tinuum, the greater the chances that a true and measur-
able difference can be found. Thus, to be truly useful, the
full range of the measure shouldbe observedwithfewpeople
scoring at either the lowest (floor) or the highest end (ceil-
ing) of the continuum.
We hypothesized that the negative impact on quality
of life would be greater for (1) children with ADHD com-
bined compared with those with ADHDprimarily inatten-
tive; (2) parents reporting no success at home in getting
their child to refocus or gain control of their behavior vs
those reporting success; and (3) children not taking medi-
cation for their ADHDcompared with those receiving medi-
cation. To assess discriminant validity of the AIM, differ-
ences in scale scores between each of these groups were
examined for significance using the t test for independent
samples.
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or blood glucose monitor and, if warranted, treatment
can be modified accordingly. Pediatricians, neurolo-
gists, or psychiatrists treating inattention and hyperac-
tivity have no objective tool with which to monitor the
outcomes of treatment. Within the time constraints of a
brief office visit, clinicians often must rely on the par-
ents response to a global hows it going or use ques-
tionnaires that just examine core symptoms to deter-
mine if therapeutic intervention is having an effect. To
our knowledge, nothing exists that enables the practi-
tioner to fine-tune treatment for ADHD based on the
information that is exchanged in these encounters.
Givencurrent prevalence estimates, reliable andvalid
tools are needed to facilitate a more rigorous approach
to evaluating interventions at the time of the clinic visit.
Measuring the outcome of care onthe quality of the childs
everyday life in addition to current core symptom ques-
tionnaires would enable clinicians treating ADHD to
benchmark the outcome of their care in terms that are
increasingly meaningful to the families and children they
are treating.
The purpose of this study was to develop and evalu-
ate a brief parent-completed questionnaire that could be
ultimately used by clinicians to document the outcome
of care specifically for children with ADHD. The mea-
sure can be completed at home or while families are wait-
ing to be seenby the physician. It was designed to comple-
ment diagnostic information and other clinical data by
assessing the experiences and feelings of families and chil-
dren with inattention and hyperactivity and the degree
to which the childs disorder affects the quality of their
lives at home and in general. Specifically, we were inter-
ested in developing a brief tool that could answer ques-
tions suchas: Is the family limitedindoing the usual things
like entertaining at home or going to public places? How
worried are parents about their childs future or about
the effects of ADHD on other siblings? How do they feel
about their ability to cope with their childs ADHD? Is
their child excluded fromthe usual activities with friends
such as sleepovers, parties, or just hanging out?
Given the focus of our tool, parents were identified
as the appropriate respondent (as opposed to teachers
who are often used in ADHD studies). Further, the par-
ent was chosenas the primary respondent sothat we might
capture preschool-aged children in addition to those at-
tending school. Future efforts will explore the develop-
ment of a youth self-report.
RESULTS
SAMPLE CHARACTERISTICS
Responses were received from 81 (31%) of the 259 fami-
lies surveyed. Table 2 gives the demographic profile of
the responding families and patients. Mothers (76 [94%])
preponderantly completed the questionnaires. The ma-
jority (60 [74%]) of the patients were boys, who were dis-
tributed relatively evenly inage and school grade. Aneven
split was observed between children whose parents re-
ported a diagnosis (n=80) of ADHD primarily inatten-
tive (40 [50%]) and those whose parents reported a di-
agnosis of ADHDcombined (40 [50%]). A large majority
(70 [86%]) of the sample (n=70) hadbeendiagnosedwith
ADHD1 year or longer prior to completing the AIM. Par-
ents reported that 49 (63%) of the 78 children for whom
medication status was provided were taking their medi-
cation as directed during the 2 weeks prior to completing
the AIM. Fifteen children (19%) had taken a short drug
Table 1. Sample of the AIM*
Instructions to Parent: Some children are very active, have trouble
paying attention, or concentrating. We want to know the impact this
may have on them and the everyday life of their families. Following are
comments made by parents of children with ADHD
(attention-deficit/hyperactivity disorder).
Please read the following statements. Then mark the response that
best reflects how well you feel it applies to you or your child.
1. During the past 2 weeks, my child did well following through with
chores and homework on his or her own. How well does this
statement reflect what life was like for your child?

A Lot Quite a Bit Some A Little Bit Not at All
2. During the past 2 weeks, my child behaved well in public places.
How well does this statement reflect your childs behavior?

A Lot Quite a Bit Some A Little Bit Not at All
3. My childs ADHD has added stress to our home life. How well does
this statement reflect your personal feelings?

A Lot Quite a Bit Some A Little Bit Not at All
4. I am frustrated that my childs ADHD is unmanageable. How well
does this statement reflect your personal feelings?

A Lot Quite a Bit Some A Little Bit Not at All
*AIM indicates Attention-deficit/Hyperactivity Disorder Impact Module,
HealthAct, Boston, Mass.
Table 2. Clinical Characteristics of the 81 Children
With Attention-deficit/Hyperactivity Disorder (ADHD)
Characteristic No. (%)
Sex
Responding parent, F 76 (94)
Patient, M 60 (74)
School grade of patient
Kindergarten-2nd 20 (25)
3rd-5th 27 (33)
6th-8th 20 (25)
9th 14 (17)
Diagnosis*
ADHD primarily inattentive 40 (50)
ADHD combined 40 (50)
Time since initial diagnosis
6 mo 4 (5)
6 mo-1 y 7 (9)
1 y 70 (86)
Medication status
Taking as directed 49 (63)
On holiday
1-4 d 15 (19)
5 d 5 (6)
Not receiving medications for ADHD 9 (11)
*Percentages may not total 100 because of rounding. Percentages are
based on the number of patients for whom a response was received (n = 80).
Percentages are based on the number of patients for whom a response
was received (n = 78).
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holiday (4 days), 5 (6%) had taken a lengthy drug holi-
day (5 days), and 9 (11%) were not taking medication
at the time the questionnaire was completed.
The Figure profiles parental attributions regard-
ing ADHD. Astrong majority (66%-70%) feel that ADHD
is a health or behavioral issue. Yet, 45% to 48% of the
parents also attribute ADHDto parenting and discipline
issues. These findings underscore the importance of ad-
ditional educationand management for childrenand their
families. Specifically, what is needed is further educa-
tion about the neurological basis of ADHD and the
special skills necessary in parenting a child with this
condition.
INSTRUMENT PERFORMANCE
Respondents hadtohave answeredat least half of the items
for each of the scales to be included in the analysis. Us-
ing this criterion, no one was omitted from the analysis.
Minimal missing data were observed in 1% to 2% of the
responses for only 3 items in the Child Scale (child has
received positive feedback, child seems comfortable with
how things are going, and child adapts well to unex-
pected changes) and 2 items in the Home Scale (limits
me fromentertaining and I amfrustrated that my childs
ADHD is unmanageable). For a third item in the Home
Scaleeffect on siblings7 parents indicated by writ-
ten comment that the item was not applicable be-
cause they had an only child. Given the hypothesized lin-
earity of items, which is the theoretical underpinning of
the Likert approach, and the low miss rate, values were
not imputed for the omitted items. The SE for the entire
group, which is based on sample size, was 11. This is not
surprising given the small sample (n=81). The average
SE for groups of 200 or more ranges from 0.04 to 0.06.
Thus, in this sample, items had to work harder at meet-
ing the scaling criteria.
Item Internal Consistency and
Item Discriminant Validity
Item correlations for the Child Scale ranged from 0.53
to 0.71 and for the Home Scale from0.61 to 0.85. Eighty-
eight percent of the items in the Child Scale and 100%
of items in the Home Scale met the item-discriminant cri-
teria. These findings confirmed that our scoring ap-
proach (ie, summing the items and deriving 2 indepen-
dent scale scores) was appropriate.
Floor and Ceiling Effects
A relatively even distribution of responses was observed
across both scales. No floor effects were observed for ei-
ther scale. A minimal ceiling effect (2%) was observed
for the Home Scale only. This finding suggests that the
AIM has potential discriminatory power and any differ-
ences observed in mean scale scores would not be due
to chance occurrence.
Reliability
The Cronbach coefficient observed for the Child Scale
was 0.88. The Cronbach coefficient for the Home Scale
was 0. 93. These coefficients substantially exceed the rec-
ommended criteria (0.70) for group-level comparisons.
They also provide evidence that the scales may be suffi-
ciently robust for patient-specific reportinga distinct
advantage for both families and practitioners. As such,
the instrument would provide practitioners with a tool
to assess individualized treatment strategies and deter-
mine their benefits and limitations for the child and his
or her family.
Discriminatory Power
Analyzed by the t test for independent samples, scores
on both the Child and the Home Scales were signifi-
cantly worse for children with ADHDcombined than for
children with ADHD primarily inattentive. Mean scale
scores for the 2 groups are given in Table 3. The mean
Child Scale score for children with ADHDcombined was
48.86 vs 65.26 for children with ADHD primarily inat-
tentive (P=.000). The mean Home Scale score was 51.26
vs 72.79 (P=.000), respectively.
Also given in Table 3 are the significant differences
observed across the Child and Home Scales for parents
reporting success with behavioral interventions at home
as comparedwiththose reporting no success. Better scores
were observed for parents reporting success vs no suc-
cess on both the Child Scale (62.12 vs 47.36, P=.001)
and the Home Scale (70.58 vs 47.01, P=.000).
An interesting pattern was observed (but not tested
for significance) for the item success at home with be-
havioral interventions. Of those reporting success
(n=39), more were parents of children with ADHD pri-
marily inattentive (n=30) relative to parents of children
withADHDcombined(n=9). For those indicating no suc-
cess (n=40), a relatively equal distribution was ob-
served across the parent-reported diagnostic subgroups
(ADHD primarily inattentive [n=19] and ADHD com-
bined [n=21]).
These data were inadequate to determine signifi-
cant statistical differences in quality of life between those
patients taking medication and those not taking medi-
cation. Only 9 children (11%) were not actively taking
40
15
20
25
30
35
30
36
14
13
8
10
5
0
%

o
f

R
e
s
p
o
n
d
e
n
t
s
Behavioral Value Parenting Issue Discipline Issue Health Issue
33
37
17
9
4
16
29
22
17 17
22
26
18
19
14
Strongly Agree
Agree
Neither Agree or Disagree
Disagree
Strongly Disagree
Parental attribution about attention-deficit/hyperactive disorder as it relates
to their childs and their familys quality of life. Percentages may not total
100 because of rounding.
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medication and 5 (56%) of these represented the ADHD
primarily inattentive group. The same pattern was ob-
served for the 20 children on drug holiday (25%) with
12 (60%) representing the ADHD primarily inattentive
group. Thus, of the 29 patients who were not receiving
medications or who were on a drug holiday, 17 patients
(59%) were categorized as having ADHD primarily in-
attentive. It was impossible to control for the confound-
ing effect of the diagnosis and potential skewing of these
data owing to the small sample size.
COMMENT
This pilot test of the AIMprovides clinicians with a prom-
ising new option for gathering standardized informa-
tion on the effect of ADHD and its treatment on the ev-
eryday life of affected children and their families. A
multimodal treatment strategy has long been advocated
for treating children with attention difficulties. To date,
however, there has not beena way for measuring andcom-
paring the benefits of different treatment options as they
occur in the applied clinical setting. In addition, current
questionnaires only examine the core symptoms of ADHD
that are certainly important but probably inadequate from
a clinical viewpoint.
Currently, physicians must rely on symptomcheck-
lists and information obtained in brief and often hur-
ried encounters with parents to determine whether and
to what degree an intervention is improving the childs
life at home. Finally, we are unaware of any available tool
that assesses the effect of ADHD on parents. Thus, cur-
rent assessment strategies fail to fully gauge the effect that
ADHDand its treatment may have on the everyday qual-
ity of life for children with ADHD and their families. If
we are to truly understand the effect of ADHD interven-
tions on the life of the child and his or her family, the
outcome of treatment must be routinely monitored over
timewith measurement occurring parallel to the clini-
cal encounter.
Reliability estimates indicate that the AIM scales
can be used with confidence for group-level compari-
sons and that they approach or exceed the minimum
level for use to monitor the outcome of care at the indi-
vidual patient level. The next step is to assess reliability
of the AIM in longitudinal prospective studies and to
further monitor its performance at the individual
patient level. Preliminary findings of discriminant valid-
ity, as evidenced by expected and observed differences
in mean scale scores for children with ADHD primarily
inattentive vs ADHD combined and parents reporting
success at home vs no success, confirm other published
work in the field.
While these general findings underscore what has
been reported from large-scale studies, the AIM pre-
sents as a potentially promising new tool that dimen-
sions the influence of ADHD. Future efforts will exam-
ine data at a practice or clinic level to assess the outcome
of different treatment options. Benchmarking care in this
way will, in the long-term, provide the evidence neces-
sary for defining best-practice guidelines.
There are several limitations to this study that
must be noted. First, we acknowledge that the number
of patients returning questionnaires was low. To protect
patient confidentiality and to fulfill the requirements of
the institutional review board, it was impossible to fol-
low up with patients, obtain demographic information
about nonrespondents, or obtain current contact infor-
mation for those patients who might have moved since
their initial visit to the clinic. Given these constraints,
we were unable to determine if our respondents are rep-
resentative of all patients and families listed in the
ADHD database from which our study sample was
drawn.
Our principal interest was in evaluating the under-
lying conceptual structure of a new tool to capture the
effect of ADHD on children and families as opposed to
describing the effect of ADHDon families in general. The
full range of possible scores was observed across the AIM
scales indicating both the high and low effects on well-
being and family life. Thus, there is no reason to believe
that the sample is skewed toward one end of the spec-
trum or the other. Future efforts will focus on the de-
sign of clinic-based prospective studies wherein we can
further evaluate the performance of the AIM.
Further, although, our sample may be small rela-
tive to the percentage of children diagnosed as having
ADHD, traditional psychometric tests, such as those dis-
cussed in this article, are sample sensitive. As such, cri-
teria are actually more stringent and difficult to achieve
with samples of less than 100. Despite the small sample,
the effect size was large enough that the AIM achieved
the standards and performed well. These preliminary re-
sults are encouraging and suggest that the AIM can be
used with confidence as normative data are collected and
a larger prospective study is undertaken.
Second, our sample was obtained from an ADHD
specific clinic database associated withanacademic medi-
cal center and, thus, may not be generalizable to other
clinic settings. A review of clinic records between April
1, 2000, and June 30, 2000, indicated that 54 children
Table 3. Comparison of AIM Scale Score by Diagnostic Group and Success With Interventions at Home*
Diagnostic Group
Success at Home
ADHD
Inattentive
ADHD
Combined t Statistic P Value Yes No t Statistic P Value
Child 65.26 (17.86) 48.86 (18.24) 4.06 .000 62.12 (20.05) 47.36 (15.58) 3.45 .001
Home 72.79 (24.34) 51.26 (24.61) 3.93 .000 70.58 (23.98) 47.01 (23.78) 4.27 .000
*Data are given as mean (SD). AIM indicates Attention-deficit/Hyperactivity Disorder (ADHD) Impact Module, HealthAct, Boston, Mass.
The ADHD Inattentive indicates children who had ADHD who are primarily inattentive; ADHD combined, children who are both inattentive and hyperactive.
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with ADHD were seen. Of these, 44 (82%) were diag-
nosed as having ADHD combined. Thus, we believe the
pool of respondents was drawn froma clinic database that
reflects the general profile for other clinics treating this
affected population. Since patients were not identified,
it is impossible to link their responses on the AIM to a
standardized diagnostic tool. Thus, for evaluating the dif-
ferences in scores by diagnostic group, we were limited
to using parental reports. Based on our work with par-
ent interviews and the standardized use of parent-
completed ADHDdiagnostic tools, we feel confident that
parents are accurate reporters. Future efforts will focus
on the correlation between scores on standard diagnos-
tic tools and the AIM.
Third, we did not ask parents to report comorbidi-
ties. However, it was possible to retrieve the principal
diagnoses for the clinics current data set. Findings in-
dicate that 41% have problems associated with aca-
demic issues, 15%have behavioral issues, 14%have lan-
guage problems, 8% have psychiatric or emotional
problems, 5%have motor or sensory problems, 5%have
global cognitive problems, 4% have environmental or
family problems, 4%have problems with organizational
skills, approximately 3% have autism-social cognition
problems, and 1% have problems with specific organic
causes. Comorbidities and their effects on quality of life
will be monitored as the measurement properties of the
AIM are further evaluated.
Questionnaire development is a complex and itera-
tive process. Each application of the AIM will provide
further insight into its strengths and limitations. Use of
this tool in the clinical research setting may not only be
useful to practicing clinicians, but data that are gener-
ated will be an invaluable asset in the interpretation of
scores and, ultimately, with further study, the assess-
ment of practice guidelines. Future efforts will focus on
key issues such as the sensitivity of the AIM to changes
over time and with drug treatment, relationship with di-
agnostic tools, and the development of a normative da-
tabase to determine whether children of different ages
or from different backgrounds score differently. Inves-
tigations are in place to further assess the performance
of the AIM with an eye toward its ongoing use as an im-
portant tool to augment the diagnostic process and fur-
ther assist practitioners in benchmarking the care and
treatment of ADHD. Ultimately, informationfromthe AIM
will yield a richer understanding about the success of vari-
ous treatment options (what works and does not work)
in terms that are most meaningful to the children with
ADHD and their families.
Accepted for publication December 6, 2001.
Development work on the AIM was funded in part by
Eli Lilly & Company, Indianapolis, Ind.
Corresponding author and reprints: Jeanne M. Land-
graf, MA, HealthAct, 205 Newbury St, Fourth Floor, Bos-
ton, MA 02116 (e-mail: jml@healthact.com).
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