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A Best-Worst Scaling Experiment to Prioritize Caregiver

Concerns About ADHD Medication for Children
Melissa Ross, M.A., John F. P. Bridges, Ph.D., Xinyi Ng, B.S.Pharm., Lauren D. Wagner, M.S., Ph.D., Emily Frosch, M.D.,
Gloria Reeves, M.D., Susan dosReis, Ph.D.

Objective: The objective of this feasibility study was to de- Results: The significance of best-worst scores for most
velop and pilot an instrument to elicit caregivers’ priorities concerns indicated that the choices were purposeful.
when initiating attention-deficit hyperactivity disorder (ADHD) Concerns about helping the child become a success-
medication for their child. ful adult, having a doctor who addresses caregivers’
concerns, and improving school behavior were ranked
Methods: A best-worst scaling experiment was used to rank highest.
competing priorities when initiating ADHD medicine. Forty-six
participants were recruited for a two-phase study involving survey Conclusions: The best-worst scaling method can elicit pri-
development (phase 1, N521) and the survey pilot (phase 2, orities for children’s mental health treatment. Future work
N525). Best-worst scores and 95% confidence intervals in- using this method will guide family-centered care.
dicating the relative importance of 16 concerns were determined,
and t tests were used to determine the scores’ significance. Psychiatric Services 2015; 66:208–211; doi: 10.1176/

Attention-deficit hyperactivity disorder (ADHD) now affects deciding whether to use ADHD medication for their child.
11% of U.S. children ages 17 or younger (1,2), and 3.5 million Best-worst scaling was preferred to a conjoint discrete-choice
are prescribed a stimulant medication (2). Children often experiment, often used in health care research (10,11), for
need medication—yet among caregivers, the acceptability of several reasons. Grounded in random utility theory, best-worst
medication is low, and there is much uncertainty about using scaling evokes tradeoffs by asking individuals to select one best
medication for their child (3–7). Even when medication is and one worst attribute among competing alternatives within
initiated, many caregivers discontinue use within two years a profile. By comparison, conjoint experiments force selec-
(3,4,8). tions among two or more different profiles. With best-worst
Several studies have focused on caregivers’ perceptions scaling, individuals select attributes that are of greatest value
of treatment for ADHD, mostly among low-income families to them relative to other shown attributes; as a result, in-
from racial-ethnic minority groups. Caregivers initially do formation about what matters most to individuals is gained
not use medication, reluctantly turn to medication only after (12–14). This provides more enriched information on hetero-
exhausting all other options, and do not always view ADHD geneity of specific priority concerns than can be obtained from
medication as appropriate for children (3–5). However, prior selecting one profile containing multiple priorities (12–14). In
research has not elicited how caregivers’ priorities may in- addition, best-worst scaling makes it possible to estimate and
fluence decisions to initiate medication for their child (7,9). compare the average utility of a profile’s attributes, whereas in
Therefore, this feasibility study aimed to develop and pilot a a conjoint discrete choice experiment, the reference group is
best-worst scaling instrument to assess caregivers’ priorities the whole scenario (14).
when initiating ADHD medicine for their child. The Uni- Two separate convenience samples were recruited from
versity of Maryland Institutional Review Board approved two support organizations in metropolitan Baltimore for
the study and granted a waiver of informed consent. caregivers of children with mental health needs. First, a sam-
ple of 21 caregivers participated in focus groups as part of the
development of the best-worst scaling instrument. A second
sample of 25 caregivers of children ages four to 14 with an
Mixed methods were used to develop and test a best-worst ADHD diagnosis participated in a pilot study of the best-worst
scaling instrument to elicit caregivers’ priority concerns when scaling instrument. The demographic characteristics of the

208 Psychiatric Services 66:2, February 2015


two samples were very similar. A majority (.75%) was African The family support group leader from a different orga-
American, and most (.85%) were the children’s biological nization helped to recruit caregivers for the pilot from five
mothers. support groups for families in the Baltimore metropolitan
Attribute statements for the best-worst scaling instrument area. During the pilot, conducted from November 2012 to
were identified by using data from a previous qualitative study January 2013, 25 caregivers used paper and pencil to com-
of caregivers’ experiences. The study examined the experiences plete the best-worst scaling instrument. All of the partic-
of caregivers as they came to terms with the ADHD diagnosis ipants had children between the ages of 4 and 14 who had
and medication treatment (3,4). This prior work generated been diagnosed as having ADHD, and all used medication for
a model of caregivers’ priorities in initiating medication that their child. Most of the children also were currently using
was grounded in their views of treatment in term of appro- psychotherapy or had an individualized education plan.
priateness (for example, whether the child was too young), The principal investigator and a graduate research as-
anticipated effects (whether the medication would harm the sistant attended the support group meetings, explained the
child), and symbolic representation (whether using medicine purpose of the survey, and provided instructions for com-
meant being a bad parent) (3). This model was cross-referenced pleting the choice tasks. The pilot survey was completed, on
with the published literature (5,6) to develop a list of attribute average, in 15 minutes. At the conclusion of the meeting,
statements. participants were asked to provide feedback regarding the
In October 2012, a family support group leader from one of clarity and relevance of the choice task profiles. No further
the family organizations recruited caregivers for the first modifications were recommended.
sample. Caregivers were asked to participate in focus groups to Survey responses for each choice task profile were coded
assess attribute statement relevance. Fifteen caregivers par- into two binary variables. The statements chosen as best and
ticipating in the first of two focus groups were presented with worst each received a score of 1, and the statements that were
26 attribute statements reflecting the potential priorities of not chosen as best or worst received a score of 0. Best-worst
caregivers when considering whether to initiate ADHD med- scores for each attribute statement were calculated as the sum
ication for their child. They were asked to classify the state- of the best selections minus the sum of the worst selections
ments into four categories (short-term concern, long-term across all respondents divided by 150 (the number of times
impact, societal views, and supportive network) or, if needed, each attribute statement was displayed [N56] multiplied by
to suggest a new category. On the basis of this feedback, at- 25 participants) (15). A t test assessed if scores differed sig-
tribute statements were revised and presented to a second nificantly from 0 (a5.05), which would imply that selections
focus group of six members of the same support organization were not made at random but reflected stated priorities.
for verification and relevance. No further amendments were
Sixteen attribute statements for the best-worst scaling in-
strument were retained. The statements were divided evenly A positive best-worst score indicated that the attribute state-
by category, with each category containing two positively and ment was selected as most important more frequently than it
two negatively phrased statements. Two child psychiatrists was selected as least important, and negative best-worst scores
reviewed the clinical and practical relevance of the attribute indicated the opposite. The number of times each attribute
statements. statement was chosen as best and worse is shown in Table 1,
A balanced, incomplete block design was used to construct along with each attribute’s mean best-worst score and 95%
the choice task profiles so that each attribute statement was confidence intervals. All attribute statements except “ADHD
seen the same number of times and any two attribute state- medicine is not needed to control my child’s home behavior”
ments appeared together the same number of times. This were significant (p,.05).
design ensured equal probability of selection for each attri- Ranking of mean best-worst scores from largest to smallest
bute statement. The survey had 16 choice task profiles, each was used to determine relative attribute importance. Overall,
displaying six of the 16 attribute statements. [An example of using medication to help their child become a successful adult
a best-worse choice task profile is available online as a data (.41) was ranked highest, and concern that others would think
supplement to this article.] badly of the child if he or she used ADHD medicine (–.53)
In each choice task profile, participants were asked to was ranked lowest. [A list of attribute statements ranked by
think back to when they first learned of their child’s ADHD highest to lowest best-worse score is available online as a data
diagnosis and some of the situations that influenced their supplementto this article.] Table 1 lists the attribute state-
decision to initiate ADHD medication. They were instruc- ments in each category by order of importance. Control of
ted to select one attribute statement from among the six school behavior (.39) was the highest-ranked short-term
choices that reflected the most important concern (best concern (p,.001). The role of medicine in helping the child
choice) and then select one attribute statement that re- be a successful adult was a key long-term concern (p,.001).
flected the least important concern (worst choice) that The only positive score in the supportive-network category
influenced their decision to initiate ADHD medication for was having a doctor who addressed the caregivers’ con-
their child. cerns about ADHD medicine (p,.001). Scores for the other

Psychiatric Services 66:2, February 2015 209


TABLE 1. Best-worst score for 16 attribute statements related to medication of children with ADHD, Children’s mental health ser-
ranked by importance within each category of concerns vices research has been lim-
Category and attribute statements Best-worse score (M)a 95% CI Bestb Worstc p ited by a lack of rigorous
Short-term concerns methods for eliciting caregiver
ADHD medicine is needed to control .39 .35 to .43 58 0 ,.001 priorities. Eliciting caregivers’
my child’s school behavior priorities early in the clinical
ADHD medicine side effects .23 .19 to .26 37 3 .038 encounter can guide family-
outweigh its benefits
ADHD medicine will help my child get .07 .03 to .10 21 11 ,.001
centered treatment planning.
better grades There were several limita-
ADHD medicine is not needed to –.05 –.02 to –.09 9 17 .057 tions. The sample was limited
control my child’s home behavior in diversity, size, and geo-
Long-term impact graphic locale and may not
ADHD medicine will help my child be .41 .36 to .45 63 2 ,.001 generalize to all caregivers of
a successful adult
children with ADHD. Although
ADHD medicine has risks that will .28 .24 to .32 43 1 ,.001
affect my child’s future health recruitment from different ad-
ADHD medicine will help my child .15 .12 to .19 28 5 ,.001 vocacy organizations can result
finish high school in potentially different sam-
ADHD medicine will limit my child’s –.09 –.06 to –.13 8 22 .005 ples, convenience sampling was
career options
used to recruit caregivers from
Supportive network homogeneous sources. The
The doctor addresses my concerns .29 .25 to .33 46 2 ,.001
about ADHD medicine
perspectives reflected the pri-
The school has pressured me to use –.30 –.29 to –.37 5 50 ,.001 orities of one parent—the
ADHD medicine for my child mother. Although we sought
My family does not see why my child –.33 –.29 to –.37 2 52 ,.001 continuous caregiver feed-
needs ADHD medicine back, this list of relevant at-
My friends agree with using ADHD –.43 –.38 to –.47 4 68 ,.001
medicine for my child
tribute statements may not be
exhaustive. However, attribute
Societal views
ADHD medicine will help my child .25 .21 to .30 45 7 ,.001 development was an iterative
get along with others feedback process in which
ADHD medicine will hurt my child’s –.05 –.02 to –.07 4 11 .034 statements were confirmed
self-esteem separately by several individ-
Giving my child ADHD medicine does –.30 –.25 to –.35 18 63 ,.001
uals. Finally, stated priorities
not mean I am a bad parent
Others will think badly of my child if –.53 –.48 to –.57 5 84 ,.001 were not correlated with treat-
he or she uses ADHD medicine ment adherence, but that was
The results are from a pilot survey of 25 family members of children with ADHD. The best-worse score represents
not the goal of this feasibility
the sum of times the attribute was chosen as the best (most important) concern minus the sum of times the attribute study.
was chosen as the worst (least important) concern, divided by 150 (the number of times the attribute was displayed The purpose of this feasi-
[N56] multiplied by the number of participants). Scores can be ranked from highest to lowest to reflect the order of
bility study was to test a best-
Number of times the attribute statement was chosen as the most important concern worst scaling instrument prior
Number of times the attribute statement was chosen as the least important concern to use in a larger comprehen-
sive survey. The instrument is
attributes in the category indicated that family, friends, and currently being used in a study that is designed to capture
school personnel were less important influences compared clinical diagnoses and receipt of mental health care services in
with doctors. With the exception of the child’s peer rela- order to assess the association between priorities and treatment
tions, all other attributes in the societal views category adherence.
were negative.
Caregivers’ priorities are nuanced and have an impact on
This study demonstrates the feasibility of best-worst scaling decisions about their child’s or adolescent’s mental health
for eliciting caregivers’ priorities in initiating medication for care. The methods described here may help to better de-
their child’s ADHD. Significant best-worst scores indicated fine, recognize, and understand caregivers’ priorities so
that choices were not random selections. Caregivers com- that clinicians may engage caregivers in shared decision
pleted the instrument with relative ease. making about treatment for their child. This could accel-
The caregiver-centered instrument holds great promise erate caregiver-centered outcomes research in children’s
for advancing family-centered research and clinical practice. mental health.

210 Psychiatric Services 66:2, February 2015


AUTHOR AND ARTICLE INFORMATION use. Journal of Developmental and Behavioral Pediatrics 28:179–188,
Ms. Ross, Ms. Ng, Dr. Wagner, and Dr. dosReis are with the Department 2007
of Pharmaceutical Health Services Research, University of Maryland 6. Bussing R, Zima BT, Gary FA, et al: Barriers to detection, help-
School of Pharmacy, Baltimore. Dr. Bridges is with the Department of seeking, and service use for children with ADHD symptoms. Journal
Health Policy and Management, Johns Hopkins Bloomberg School of of Behavioral Health Services and Research 30:176–189, 2003
Public Health, Baltimore. Dr. Frosch is with the Division of Child and 7. dosReis S, Butz A, Lipkin PH, et al: Attitudes about stimulant
Adolescent Psychiatry, Johns Hopkins University School of Medicine, medication for attention-deficit/hyperactivity disorder among Af-
Baltimore. Dr. Reeves is with the Department of Psychiatry, University of rican American families in an inner city community. Journal of
Maryland School of Medicine, Baltimore. Send correspondence to Dr. Behavioral Health Services and Research 33:423–430, 2006
dosReis (e-mail: 8. Charach A, Ickowicz A, Schachar R: Stimulant treatment over five
years: adherence, effectiveness, and adverse effects. Journal of the
This work was funded by a grant from the National Institute of Mental American Academy of Child and Adolescent Psychiatry 43:559–567,
Health (R34 MH093502) to Dr. dosReis. The authors are grateful to Osler 2004
Andres, Pharm.D., and Katie Brant, Pharm.D., for their assistance in 9. Fiks AG, Mayne S, Debartolo E, et al: Parental preferences and
piloting the survey and to Bev Butler, Jane Walker, and Angela Vaughn- goals regarding ADHD treatment. Pediatrics 132:692–702, 2013
Lee for community outreach with the families who participated in the 10. Cunningham CE, Deal K, Rimas H, et al: Providing information to
pilot. parents of children with mental health problems: a discrete choice
The authors report no financial relationships with commercial interests. conjoint analysis of professional preferences. Journal of Abnormal
Child Psychology 37:1089–1102, 2009
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