Barriers to Oral Medication Adherence for Adolescents with
Inflammatory Bowel Disease
Lisa M. Ingerski,1PHD, Robert N. Baldassano,2MD, Lee A. Denson,3,4MD, and
Kevin A. Hommel,1,4PHD
1Center for the Promotion of Treatment Adherence and Self-Management, Division of Behavioral Medicine
and Clinical Psychology, Cincinnati Children’s Hospital Medical Center,2Center for Pediatric Inflammatory Bowel
Disease, Division of Gastroenterology, Hepatology, and Nutrition, Children’s Hospital of Philadelphia,
Department of Pediatrics, University of Pennsylvania School of Medicine,3Schubert-Martin Inflammatory
Bowel Disease Center, Division of Gastroenterology, Hepatology and Nutrition, Cincinnati Children’s Hospital
Medical Center, and4Department of Pediatrics, University of Cincinnati College of Medicine
disease (IBD) and examine their relationship to 6-MP/azathioprine and 5-ASA medication
adherence.MethodsParticipants included 74 adolescents, aged 13–17 years, diagnosed with IBD and
their caregivers. Adolescents and caregivers jointly completed a measure of barriers to medication adherence.
Adherence to medication was measured by family-report, pill-count, and serum assay.
endorsed one to seven total barriers to medication adherence. The most commonly reported barriers included
forgetting, being away from home, and interference with an activity. Neither demographic nor disease severity
variables were related to the total number of reported barriers. Fewer total reported barriers was related to better
adherence by adolescent and maternal report.Conclusion
to treatment adherence. Effective problem-solving around these barriers and its integration into future treatment
protocols may help improve medication adherence in the pediatric IBD population.
To identify family-reported, adherence-related barriers for adolescents with inflammatory bowel
Most families experience at least one barrier
Key words adherence; barriers; Crohn’s disease; pediatric; ulcerative colitis.
While still a relatively new area of study, a large body of
literature has recently developed documenting rates of
adherence to medical regimens across pediatric popula-
tions. Reviews suggest adherence rates range from 50%
to 55% across various pediatric chronic illness groups
(Rapoff, 1999; Rapoff & Barnard, 1991). Interestingly,
disease self-management is a particular problem during
adolescence, when adherence to treatment regimens
often declines (Smith & Shuchman, 2005). Of note,
developmental demands during this period (e.g., decline
in parental supervision, peer influences, and increase in
automony) likely contribute to higher rates of adherence-
related difficulties (Anderson, Ho, Brackett, Finkelstein, &
Laffel, 1997; Butner et al., 2009; Stewart & Dearmun,
2001). Understanding how youth and families follow
prescribed regimens during adolescence has significant
implications for both treatment effectiveness and long-term
health outcomes (Fotheringham & Sawyer, 1995; Higgins,
Rubin, Kaulback, Schoenfield, & Kane, 2009; Osterberg &
Blaschke, 2005; Smith & Shuchman, 2005).
Adherence is especially important for youth diagnosed
with Crohn’s disease and ulcerative colitis (UC), collective-
ly referred to as inflammatory bowel disease (IBD), where
even lower rates of adherence have been documented.
Affecting approximately 71 of every 100,000 youth
(Kappelman et al., 2007), IBD is a chronic disease
characterized by intermittent inflammation of the gastro-
intestinal tract. Previous research describes rates of
All correspondence concerning this article should be addressed to Kevin A. Hommel, PhD, Center for the Promotion of
Treatment Adherence and Self-Management, Division of Behavioral Medicine and Clinical Psychology, Cincinnati
Children’s Hospital Medical Center, 3333 Burnet Ave., MLC 7039, Cincinnati, OH 45229-3039, USA.
Journal of Pediatric Psychology 35(6) pp. 683–691, 2010
Advance Access publication September 23, 2009
Journal of Pediatric Psychology vol. 35 no. 6 ? The Author 2009. Published by Oxford University Press on behalf of the Society of Pediatric Psychology.
All rights reserved. For permissions, please e-mail: email@example.com
nonadherence ranging from 50% to 88% (Hommel,
Mackner, Denson, & Crandall, 2008; Mackner &
Crandall, 2005; Oliva-Hemker, Abadom, Cuffari, &
Thompson, 2007). The unpredictable nature of IBD treat-
and prognosis likely impact youth’s overall behavioral
functioning (Mackner, Crandall, & Szigethy, 2006). In
addition, while no data are currently available in the
pediatric population, research suggests that non-adherent
adults diagnosed with IBD are 5.5 times more likely to
experience relapse (Kane, Huo, Aikens, & Hanauer,
2003) and have 12.5% higher annual healthcare costs
(Higgins et al., 2009) compared to adherent patients.
Taken together, the documented rates of nonadherence,
unpredictable nature of the disease, and significant
health risks and costs associated with nonadherence in
IBD suggest that greater understanding of adherence in
this population is a critical need.
While a number of models to understand nonadher-
ent behavior have been proposed, the health belief model
has gained increasing support in pediatric populations
(Bush & Iannotti, 1990). This model posits that an indi-
vidual’s perceived risk, consequences, benefits, barriers,
and cues each impact adherence-related behaviors. Thus,
one of the key components in planning effective inter-
ventions to improve treatment adherence is appropriately
addressing perceived barriers to treatment regimens
(Lemanek, Kamps, & Chung, 2001). While previous
research suggests that behavioral and multi-component
interventions are often effective in improving adherence-
related behaviors (Drotar, 2000; Kahana, Drotar, &
Frazier, 2008), understanding the key barriers to treatment
recommendations is a critical step in planning and imple-
menting such interventions and, perhaps, preventing
Research in other pediatric populations provides
preliminary information regarding possible barriers to
adherence in pediatric chronic illness. For example, forget-
ting (Burgess, Sly, Morawska, & Devadason, 2008;
Marhefka et al., 2008; Modi et al., 2009; Modi &
Quittner, 2006; Zelikovsky, Schast, Palmer, & Meyers,
2008) is a frequently cited barrier across pediatric
asthma, cystic fibrosis (CF), human immunodeficiency
virus (HIV), sickle cell disease (SCD), and kidney trans-
plant; however, specific barriers often vary depending on
the population studied. Multiple barriers are often reported
by patients across populations, where the higher number
of reported barriers is related to greater difficulty adhering
to medical regimens (Marhefka et al., 2008; Modi &
Quittner, 2006). Unfortunately, no studies are currently
available that document specific barriers within the pedi-
atric IBD population or the relationship between such
barriers and treatment adherence. Given its implications
for effectively tailoring adherence-related interventions in
this population, understanding the specific barriers to
treatment adherence in IBD is needed.
barriers to medication adherence and examined their rela-
tionship with adolescents’ medication adherence. It was
hypothesized that fewer reported barriers would be related
to better medication-related adherence as measured by self-
report, pill count, and serum assay.
Participants and Procedures
The current study is part of a larger, longitudinal project
examining adherence-related behaviors in pediatric IBD.
A total of 74 adolescents (ages 13 to 17) diagnosed with
either Crohn’s disease or UC (collectively IBD) and their
primary caregivers participated in the current study. All
adolescents were receiving care at one of two pediatric
IBD centers in the Northeast or Midwest regions of
the United States. Inclusion criteria required that the
adolescent was 13–17 years of age and currently prescribed
a 5-aminosalicylic acid (5-ASA) and/or 6-mercaptopurine
(6-MP)/azathioprine. Potential participants were excluded
if the adolescent (a) was diagnosed with a neurocognitive
disorder that would limit their ability to understand
or complete measures, (b) was prescribed a current
regimen including greater than 1mg/kg/day of cortico-
steroids (due to increased risk of behavioral and
psychiatric issues [Kayani & Shannon, 2002; Soliday,
Grey, & Lande, 1999]), (c) was diagnosed with a comorbid
chronic illness, or if the adolescent or caregiver (d) was not
fluent in English. Of the 117 patients who were eligible,
88 were able to be contacted for recruitment and 14
declined to participate (due to blood draw requirement,
not enough time, and/or not interested in partici-
pating in research), resulting in a final sample of 74
adolescents and their parents. Study personnel recruited
potential participants in person or by phone to obtain
informed consent from caregivers and assent from adoles-
cents. In addition to adolescent- and caregiver-completed
questionnaires, adolescents underwent an intravenous
blood draw for a 6-thioguanine nucleotide (6-TGN)/6-
Families were compensated $25 for participation. The hos-
pitals’ Institutional Review Boards approved all study
Ingerski, Baldassano, Denson, and Hommel
Family Demographic Questionnaire
The adolescent’s primary caregiver completed a study-
specific, parent-report questionnaire to obtain family
Medical Adherence Measure
The Medical Adherence Measure (MAM; Zelikovsky &
Schast, 2008) is a semi-structured interview assessing
behaviors (e.g., frequency medication is missed or late),
organizational systems (e.g., where medication is stored,
who supervises medication), and barriers related to illness
management. The measure includes 12 commonly identi-
fied barriers to medication adherence. Respondents answer
yes or no if they perceive each item to be a barrier to
medication adherence. For the current study, consensus
between parents and adolescents was obtained on all
preceding items. The measure also asks respondents to
report the number of doses of medication they have
missed in the past 7 days and includes a one-item, patient
and parent-reported assessment of medication adherence
on a 0 (usually miss) to 10 (rarely miss) point likert scale.
Consensus was not required for this item. Research
personnel administered the measure jointly to adolescents
and caregivers. The MAM has demonstrated adequate
reliability and validity in other pediatric populations
(Zelikovsky & Schast, 2008; Zelikovsky et al., 2008).
During the clinic visit (or by parent via telephone within
48hr of the clinic visit if the patient did not bring his/her
medications to clinic) study personnel conducted pill
counts of 5-ASA and/or 6-MP/azathioprine prescribed to
the patient. Previous research supports the validity of pill
count via telephone (Pieper, Rapoff, Purviance, & Lindsley,
1989). No significant differences were found between pill
count by study personnel compared to pill count by parent
via telephone (p>.05). Adherence was calculated as: the
number of pills taken/number of pills prescribed ?100,
where higher values indicate better adherence. Similar to
other studies, the minimum/maximum adherence rate was
restricted to 0–100% (Modi & Quittner, 2006) to minim-
ize error resulting from dumping and/or combining of
pills for each medication.
Adolescents currently prescribed 6-MP/azathioprine under-
went an intravenous blood draw (5cc) for a 6-TGN/6-
MMPN assay. Preliminary research in this area supports
the use of these assays as exploratory biological proxy
measures of adherence to 6-MP/azathioprine in individuals
diagnosed with IBD (Belaiche, Desager, Horsmans, &
Louis, 2001; Hommel, Davis, & Baldassano, 2008). Ther-
apeutic (i.e., adherent) 6-TGN levels range from 230–450
pmol, while 6-MMPN levels above 5,700 pmol indicate
greater risk for hepatotoxicity (Mardini & Arnold, 2003).
Pediatric Crohn’s Disease Activity Index
The Pediatric Crohn’s Disease Activity Index (PCDAI;
Hyams et al., 1991), is a measure of disease severity for
youth diagnosed with Crohn’s disease. The measure
includes eight items (history, physical examination) and
one laboratory test (albumin) rated on a three-point scale
(0, 5, or 10) and two additional laboratory tests [hemato-
crit (CBC), erythrocyte sedimentation rate (ESR)] rated on
a separate three-point scale (0, 2.5, or 5). If not already
done for clinical purposes, the CBC, ESR, and albumin
were also completed for patients. PCDAI scores range
from 0 to 100 with higher scores indicating more active
disease. The measure has demonstrated good validity and
reliability (Hyams et al., 1991, 2005). Study personnel
completed the PCDAI using data obtained from patient
chart notes and laboratory values. Reliability for the current
sample was adequate (a¼.83).
Lichtiger Colitis Activity Index
The Lichtiger Colitis Activity Index (LCAI; Lichtiger et al.,
1994) is a measure of disease severity in UC. The measure
includes eight items (stools, pain, well-being, etc.). Scores
range from 0 to 21 with higher scores indicating more
active disease. The measure has demonstrated good valid-
ity and reliability in pediatric samples (Fanjiang, Russell, &
Katz, 2007; Lichtiger et al., 1994). Study personnel
completed the LCAI using data obtained from patient
chart notes. Reliability for the current sample was adequate
Descriptive statistics (means, standard deviations, frequen-
cies) were conducted across variables of interest. To exam-
ine possible relationships to demographic characteristics,
t-tests or correlations were used as appropriate for
dichotomous and continuous variables. Bivariate Pearson
correlations were used to test for significant relationships
between the number of reported barriers and adherence
frequency rates (i.e., percent of consumed doses). Given
the number of comparisons conducted, a Bonferroni cor-
rection was employed, in which significance was adjusted
to the p<.01 level to avoid type 1 error. Adherence and
Barriers in Adolescent IBD
disease-severity measures were treated as continuous
variables for analyses. All analyses were conducted in
SPSS 15.0 for Windows (SPSS Inc., 2007).
Adolescents ranged in age from
(14.97?1.48 years), were 41.9% female, and predomin-
antly of white, non-Hispanic origin (78.4% white, 8.1%
African American, 2.8% other, 10.7% missing). The major-
ity of adolescents were diagnosed with Crohn’s disease
(81.1% Crohn’s disease, 18.9% UC). Mean disease severity
was in the inactive range for youth diagnosed with Crohn’s
disease (PCDAI¼11.1?9.8) and for youth diagnosed
with UC (LCAI¼2.9?3.9). Caregivers were primarily
mothers (68.9% mothers, 6.8% fathers, 1.4% other,
22.9% missing). Most mothers (74.3% married, 10.8%
divorced/separated, 4.1% other, 10.8% missing) and
fathers (78.4% married, 8.1% divorced/separated, 1.4%
other, 12.1% missing) were currently married. Median
reported annual family income was $75,001–$100,000.
13 to 17 years
Medical Regimen Characteristics
In regard to timing of doses, 39.2% of families reported
most often missing morning doses of medication, 33.8%
reported most often missing bedtime doses, and 32.4%
reported most often missing afternoon doses of medica-
tion. Most families reported keeping medication on a
special shelf or cabinet (91.9%) and almost half of families
described using a pill box (44.6%) to organize medications.
Medical regimen characteristics are further summarized in
Reported adherence ratings were similar across informant:
adolescent (8.5?1.4), mother (8.8?1.2), and father
(9.1?.9). Adherence ratings by family-reported missed
doses ranged from 52.4 to 100% (94.7?11.2) for 6-MP/
azathioprine and 75.0 to 100% (96.8?4.9) for 5-ASA.
Pill count adherence ratings ranged from 0% to 100%
(64.4?28.3) for 6-MP/azathioprine and 1.7 to 100%
(62.1?27.5) for 5-ASA. Exploratory analyses revealed
significantly higher adherence by family-report compared
to pill count for both 6-MP/azathioprine (p<.001) and
5-ASA (p<.001). 6-TGN levels ranged from 3.0 to 825.0
(180.0?138.2), and only 13.5% of adolescents fell in the
therapeutic range. 6-MMPN levels ranged from 190.00 to
11,865.00 (2,362.8?2,704.5), and 6.8% of adolescents
demonstrated elevated levels.
Barriers to Medication Adherence
Overall, families endorsed one to seven total barriers to
medication adherence (2.9?1.4). The most commonly
reported barriers included: forgetting (87.8%), being
away from home (47.3%), interference with an activity
(44.6%), refusal/defiance (17.6%), ran out/didn’t fill
(16.2%), not feeling well (16.2%), and belief that medi-
cation is not necessary (14.9%). Family-reported barriers
to medication adherence are further summarized in
Neither demographic (age, gender, minority status)
nor disease severity variables were related to the total
number of barriers reported. As shown in Table III, signifi-
cant correlations were found between total number of
barriers reported and adolescent (p<.001) and maternal
reports of adherence (p<.001), such that fewer total
reported barriers was related to better adherence. The
6-MP/azathioprine self-reported missed doses on the
MAM (p<.05) approached significance and the 5-ASA
pill count (p<.01) was significant in the expected
The current study is the first to examine disease-specific,
family-reported barriers to medication adherence in a
sample of adolescents diagnosed with IBD. These findings
Table I. Medication Regimen Characteristics
Time of day families perceive a dose is most often misseda
Medication organization systema
Primary person responsible for ensuring medication is taken
Person responsible for having/ordering medicationa
aAdds up to >100%; family able to select more than one choice.
Ingerski, Baldassano, Denson, and Hommel
partially supported the primary hypothesis in that a signifi-
cant relationship was observed between fewer total
perceived barriers by family-report and better adolescent
and maternal-reported adherence. This is similar to studies
examining the relationship between total number of
perceived barriers and adherence in other populations
(Modi & Quittner, 2006; Zelikovsky et al., 2008) and
emphasizes the importance of addressing perceived bar-
riers in future interventions designed to improve adherence
in this population. Of note, the current relationship
between number of reported barriers and adherence was
statistically significant in relation to maternal- and adoles-
cent-reported medication adherence. This is understand-
able given that family-reported, perceived barriers were
used to examine barriers to treatment adherence. It is
also likely that total reported barriers do not correlate
perfectly with adherence. For example, anecdotal experi-
ence suggests that some families may adaptively cope with
a number of barriers while other families struggle and
exhibit lower adherence rates when coping with only a
single barrier. Both active (e.g., refuse to take) and passive
(e.g., forgetting) barriers were measured in the current
study and collapsed into a single barrier variable. It may
be that certain types of barriers differentially impact overall
adherence-related behaviors. In addition, shared method
variance may also potentially explain statistically significant
maternal- and adolescent-reported medication. Salient cor-
relation trends at the p<.05 level were also found between
total reported barriers and family-reported missed doses
of 6-MP/azathioprine on the MAM and objectively mea-
sured 5-ASA pill count adherence. Although not related
Table II. Participant Endorsed Barriers to Medication Adherence by Disease
Crohn’s disease (n¼60)
Ulcerative colitis (n¼14)
Interferes with activity
Hard to swallow pills
Hate the taste
Not feeling well
Don’t like the side-effects
Ran out/didn’t fill
Don’t think necessary
Table III. Correlations between reported barriers and adherence ratingsa
1.2. 3.4.5. 6. 7.8. 9.M?SD
Adolescent-reported adherence (n¼73)
Maternal-reported adherence (n¼61)
Paternal-reported adherence (n¼14)
6-MP MAM adherenceb
5-ASA MAM adherenceb
6-MP pill count
5-ASA pill count
aHigher adherence ratings indicate better adherence.
bAs reported by parent and adolescent; consensus obtained.
Barriers in Adolescent IBD
to barriers, serum assay measures of adherence were
modestly correlated with maternal ratings of adherence.
While still a relatively novel measure of treatment adher-
ence in this population, these results provide support for
the continued exploration of the utility of serum assays as
measures of adherence in the pediatric IBD population.
Certainly, these findings speak to the continued import-
ance of using multiple methods to assess adherence in
order to gain the most comprehensive adherence data
(Quittner, Espelage, Ievers-Landis, & Drotar, 2000), espe-
cially given that no single ‘‘gold-standard’’ of adherence is
yet available. Additionally, varying rates of adherence were
found using different methodologies in the current study.
For example, results suggest that families over-estimate
rates of adherence compared to adherence by pill-
counts and that assays are not significantly correlated
with pill counts. While, pharmacokinetics and variation
in individual metabolism rates may help to explain some
of these differences (Hommel, Davis et al., 2008),
research is needed to examine methods of combining
data from different adherence assessments to capitalize
on strengths of each measure and improve overall accur-
acy of adherence measurement in this population.
Findings also suggest that all families of adolescents
diagnosed with IBD experience at least one barrier to
medication adherence. Not surprising, forgetting was the
most often endorsed barrier to adherence in this sample.
While this finding is similar to studies examining perceived
barriers in other pediatric disease groups (Burgess et al.,
2008; Marhefka et al., 2008; Modi & Quittner, 2006;
Zelikovsky et al., 2008), forgetting may be a difficult barrier
to target through intervention. Moreover, it is plausible
that forgetting is indicative of another underlying barrier
to medication adherence experienced by the individual in
question. For example, an adolescent may ‘‘forget’’ to take
their morning dose of medication after rushing out the
door to catch the school bus. The target of intervention
is likely not improving specific memory skills to decrease
forgetting, but rather problem-solving with the family to
increase the amount of time the teenager has in the morn-
ing to provide ample opportunity to take the prescribed
medication dose. Introduction of other cues (i.e., electron-
ic monitoring, cell phone reminders) to remind adoles-
cents to take medications at specific times may also
prove useful in helping families to address this barrier.
Results also provide additional descriptive information
regarding medication management that may be related to
subsequent adherence. For example, almost half of families
described using a pill box, suggesting that many families
are making concerted attempts to organize medications. It
may be that the medical team provided education
regarding management or recommended strategies (i.e.,
pill box) to improve adherence; however, as this was not
assessed, further discussion regarding the motivation or
reasons behind choosing these strategies is not possible.
Interestingly, the timing of specific missed doses was
relatively similar across the day. While greater difficulty
with specific doses seems reasonable, it seems that for
this sample, adolescents have difficulty taking their
medication regardless of the timing of a particular dose.
Future research will help clarify whether specific dose
characteristics (e.g., timing of dose, number of doses) are
also perceived as possible barriers to medication adher-
ence. In addition, families were divided in regard to who
takes primary responsibility for making sure medication is
taken, the adolescent or the mother. Similarly, almost one
third of adolescents were taking primary responsibility for
ordering their medication. These two findings have import-
ant implications regarding division of responsibility for
disease management tasks. Previous research in other
pediatric disease groups suggests that continued parental
involvement in disease management is essential to main-
taining appropriate adherence and that premature transi-
tion of responsibility from parent to adolescent for disease
management tasks may result in decreased adherence over
time (Ellis et al., 2007; Wysocki et al., 1996). Future
research should further examine the contribution of
specific organizational strategies and issues concerning
transfer of responsibility for disease management tasks as
they relate to medication adherence in this population.
Overall, this is the first study to examine the relation-
ship between reported barriers and medication adherence
by adolescents with IBD. Strengths of this study include:
(a) multi-site data collection, (b) multiple methods of
adherence assessment, (c) use of a previously validated
measure of barriers to adherence in pediatric chronic
illness, and (d) inclusion of both adolescents and their
parents. Of course, this study is not without limitations.
First, these cross-sectional findings speak to the relation-
ship between total number of perceived barriers and
medication adherence, but do not indicate causality.
Future longitudinal research will need to examine whether
decreasing number of perceived barriers to medication
management results in subsequent improvements in
adherence-related behavior. Second, the measure used to
identify barriers utilized a forced-choice format of com-
monly endorsed barriers related to adherence. Use of an
open-ended interview format for qualitative data analyses
may have provided greater breadth of data in regard to
specific barriers that individual family’s experience. In add-
ition, consensus regarding responses was obtained.
Different responses may have occurred if parents and
Ingerski, Baldassano, Denson, and Hommel
adolescents were interviewed separately. Future research
will help determine possible differences in perceived bar-
riers by informant. Third, despite multi-site data collection,
the sample recruited was mostly white and reported a
median family income of $75,001–$100,000. While
representative of other recent studies in pediatric IBD
(Mackner & Crandall, 2007), the current data may not
easily generalize to minority and/or low income families
in this population. Certainly, socio-economic issues
known to impact adherence in other populations (Bender
& Bender, 2005) may also impact number of perceived
barriers and/or adherence in adolescent IBD. Similarly,
the majority of the sample reported inactive disease; re-
striction of range may have limited the ability to detect
significant relationships between total barriers and disease
severity and should be further explored in future research.
Despite the preliminary nature of the current data,
these findings provide initial support for a relationship
between barriers and adherence behaviors and may be
helpful for providers seeking to identify possible barriers
to treatment adherence. Interventions that effectively target
adherence in pediatric IBD may benefit from tailoring
specific intervention components to address the unique
barriers faced by individual families. For example, behav-
ioral family systems therapy (BFST; (Harris, Freeman, &
Beers, 2009; Robin & Foster, 1989; Wysocki et al., 2006)
is one example of a family-based intervention that may
help families of adolescents diagnosed with IBD effectively
problem-solve around barriers
adherence. Interventions such as BFST provide for the
individualization of treatment to meet a family’s unique
needs and address specific barriers that exist for different
families. Certainly, current findings suggest important
directions for future research in: (a) effective identification
and reduction of the most salient barriers for families
within future interventions, (b) the continued validation
of measures of adherence in pediatric IBD and (c) further
examination of specific treatment-related barriers to adher-
ence, especially in this high-risk adolescent age group.
Of course, barriers are one of many factors that affect
adherence in pediatric disease groups. However, given
the current results, disease-specific barriers to treatment
regimens should be given appropriate consideration as
researchers plan and implement interventions targeting
adherence within the IBD population.
Research supported in part by National Institute of
Diabetesand Digestiveand Kidney DiseasesK23
DK079037, Public Health Service Grant P30 DK 078392,
Procterand Gamble Pharmaceuticals,
Laboratories, Inc., and United States Public Health
Service Grant #M01 RR 08084 from the General Clinical
Research Centers Program, NCRR/NIH.
Conflict of Interest: None declared.
Received June 15, 2009; revisions received July 28, 2009;
accepted August 25, 2009
Anderson, B. J., Ho, J., Brackett, J., Finkelstein, D.,
& Laffel, L. (1997). Parental involvement in diabetes
management tasks: Relationships to blood glucose
monitoring adherence and metabolic control in young
adolescents with insulin-dependent diabetes mellitus.
Journal of Pediatrics, 130, 257–265.
Belaiche, J., Desager, J. P., Horsmans, Y., & Louis, E.
(2001). Therapeutic drug monitoring of azathioprine
and 6-mercaptopurine metabolites in Crohn disease.
Scandinavian Journal of Gastroenterology, 36(1), 71–76.
Bender, B. G., & Bender, S. E. (2005). Patient-identified
barriers to asthma treatment adherence: Responses to
interviews, focus groups, and questionnaires.
Immunology and Allergy Clinics of North America, 25(1),
Burgess, S. W., Sly, P. D., Morawska, A., & Devadason, S.
G. (2008). Assessing adherence and factors associated
with adherence in young children with asthma.
Respirology, 13(4), 559–563.
Bush, P. J., & Iannotti, R. J. (1990). A children’s health
belief model. Medical Care, 28(1), 69–86.
Butner, J., Berg, C. A., Osborn, P., Butler, J. M., Godri, C.,
Fortenberry, K. T., et al. (2009). Parent-adolescent
discrepancies in adolescents’ competence and the
balance of adolescent autonomy and adolescent and
parent well-being in the context of type 1 diabetes.
Developmental Psychology, 45(3), 835–849.
Drotar, D. (2000). Promoting adherence to medical treatment
in childhood chronic illness: Concepts, methods, and
interventions. Mahwah, NJ: Lawrence Erlbaum
Ellis, D., Podolski, C., Frey, M., Naar-King, S., Wang, B.,
& Moltz, K. (2007). The role of parental monitoring in
adolescent health outcomes: Impact on regimen
adherence in youth with type 1 diabetes. Journal of
Pediatric Psychology, 32(8), 907–917.
Fanjiang, G., Russell, G. H., & Katz, A. J. (2007). Short-
and long-term response to and weaning from
Barriers in Adolescent IBD
infliximab therapy in pediatric Ulcerative Colitis.
Journal of Pediatric Gastroenterology and Nutrition,
Fotheringham, M. J., & Sawyer, M. G. (1995).
Adherence to recommended medical regimens in
childhood and adolescence. Journal of Paediatrics
and Child Health, 31(2), 72–78.
Harris, M. A., Freeman, K. A., & Beers, M. (2009).
Family therapy for adolescents with poorly controlled
diabetes: initial test of clinical significance. Journal of
Pediatric Psychology, 34(10), 1097–1107.
Higgins, P., Rubin, D., Kaulback, K., Schoenfield, P.,
& Kane, S. (2009). Systematic review: impact of
non-adherence to 5-aminosalicylic acid products on
the frequency and cost of Ulcerative Colitis flares.
Alimentary Pharmacology and Therapeutics, 29(3),
Hommel, K. A., Davis, C. M., & Baldassano, R. N. (2008).
Medication adherence and quality of life in pediatric
inflammatory bowel disease. Journal of Pediatric
Psychology, 33(8), 867–874.
Hommel, K. A., Mackner, L. M., Denson, L. A.,
& Crandall, W. V. (2008). Treatment regimen
adherence in pediatric gastroenterology. Journal of
Pediatric Gastroenterology and Nutrition, 47(5),
Hyams, J. S., Ferry, G. D., Mandel, F. S., Gryboski, J. D.,
Kibort, P. M., Kirschner, B. S., et al. (1991).
Development and validation of a pediatric Crohn’s
disease activity index. Journal of Pediatric
Gastroenterology and Nutrition, 12(4), 439–447.
Hyams, J. S., Markowitz, J., Otley, A., Rosh, J., Mack, D.,
Bousvaros, A., et al. (2005). Evaluation of the
pediatric Crohn’s disease activity index: a prospective
multicenter experience. Journal of Pediatric
Gastroenterology and Nutrition, 41(4), 416–421.
Kahana, S., Drotar, D., & Frazier, T. (2008). Meta-
analysis of psychological interventions to promote
adherence to treatment in pediatric chronic health
conditions. Journal of Pediatric Psychology, 33(6),
Kane, S., Huo, D., Aikens, J., & Hanauer, S. (2003).
Medication Nonadherence and the Outcomes of
Patients with Quiescent Ulcerative Colitis. The
American Journal of Medicine, 114, 39–43.
Kappelman, M. D., Rifas-Shiman, S. L., Kleinman, K.,
Ollendorf, D., Bousvaros, A., Grand, R. J., et al.
(2007). The prevalence and geographic distribution of
Crohns disease and ulcerative colitis in the United
States. Clinical Gastroenterology and Hepatology, 5(12),
Kayani, S., & Shannon, D. C. (2002). Adverse behavioral
effects of treatment for acute exacerbation of asthma in
children. Chest, 122(2), 624–628.
Lemanek, K. L., Kamps, J., & Chung, N. B. (2001).
Empirically supported treatments in pediatric
psychology: Regimen adherence. Journal of Pediatric
Psychology, 26(5), 253–275.
Lichtiger, S., Present, D. H., Kornbluth, A., Gelernt, I.,
Bauer, J., Galler, G., et al. (1994). Cyclosporine in
severe ulcerative colitis refractory to steroid therapy.
New England Journal of Medicine, 330(26),
Mackner, L. M., & Crandall, W. V. (2005). Oral
medication adherence in pediatric inflammatory
bowel disease. Inflammatory Bowel Disease, 11(11),
Mackner, L. M., & Crandall, W. V. (2007).
Psychological factors affecting pediactric inflammatory
bowel disease. Current Opinions in Pediatrics, 19,
Mackner, L. M., Crandall, W. V., & Szigethy, E. M. (2006).
Psychosocial functioning in pediatric inflammatory
bowel diease. Inflammatory Bowel Disease, 12,
Mardini, H. E., & Arnold, G. L. (2003). Utility of
measuring 6-methylmercaptopurine and
6-thioguanine nucleotide levels in managing
inflammatory bowel disease patients treated with
6-mercaptopurine in a clinical practice setting.
Journal of Clinical Gastroenterology, 36(5), 390–395.
Marhefka, S. L., Koenig, L. J., Allison, S., Bachanas, P.,
Bulterys, M., Bettica, L., et al. (2008). Family
experiences with pediatric antiretroviral therapy:
Responsibilities, barriers, and strategies for
remembering medications. AIDS Patient Care and
STDs, 22(8), 637–647.
Modi, A. C., Crosby, L. E., Guillfoyle, S. M., Lemanek, K.
L., Witherspoon, D., & Mitchell, M. J. (2009).
Barriers to treatment adherence for pediatric patients
with sickle cell disease and their families. Children’s
Health Care, 38(2), 107–122.
Modi, A. C., & Quittner, A. L. (2006). Barriers to
treatment adherence for children with cystic fibrosis
and asthma: What gets in the way? Journal of Pediatric
Psychology, 31(8), 846–858.
Oliva-Hemker, M. M., Abadom, V., Cuffari, C.,
& Thompson, R. E. (2007). Nonadherence with
thiopurine immunomodulator and mesalamine
medications in children with Crohn disease. Journal of
Pediatric Gastroenterology and Nutrition, 44(2),
Ingerski, Baldassano, Denson, and Hommel
Osterberg, L., & Blaschke, T. (2005). Adherence to Download full-text
medication. New England Journal of Medicine, 353(5),
Pieper, K. B., Rapoff, M. A., Purviance, M. R.,
& Lindsley, C. B. (1989). Improving compliance
with prednisone therapy in pediatric patients with
rheumatic disease. Arthritis Care & Research, 2(4),
Quittner, A. L., Espelage, D. C., Ievers-Landis, C. E.,
& Drotar, D. (2000). Measuring adherence to medical
treatments in childhood chronic illness. Considering
multiple methods and sources of information.
Journal of Clinical Psychology in Medical Settings, 7,
Rapoff, M. A. (1999). Adherence to pediatric medical
regimens. New York: Kluwer Academic/Plenum Press.
Rapoff, M. A., & Barnard, M. U. (1991). Compliance with
pediatric medical regimens. In J. A. Cramer,
& B. Spilker (Eds.), Patient compliance in medical
practice and clinical trials (pp. 73–98). New York:
Robin, A., & Foster, S. (1989). Negotiating parent
adolescent conflict: A behavioral-family systems approach.
New York: Guilford Press.
Smith, B. A., & Shuchman, M. (2005). Problem of
nonadherence in chronically ill adolescents: Strategies
for assessment and intervention. Current Opinion in
Pediatrics, 17(5), 613–618.
Soliday, E., Grey, S., & Lande, M. B. (1999). Behavioral
effects of corticosteroids in steroid-sensitive nephrotic
syndrome. Pediatrics, 104(4), e51.
SPSS Inc. (2007). SPSS 15.0 for Windows, Rel. 220.127.116.11.
Chicago: SPSS Inc.
Stewart, K. S., & Dearmun, A. K. (2001). Review:
Adherence to health advice amongst young people
with chronic illness. Journal of Child Health Care, 5(4),
Wysocki, T., Harris, M. A., Buckloh, L. M., Mertlich, D.,
Lochrie, A. S., Taylor, A., et al. (2006). Effects of
behavioral family systems therapy for diabetes on
adolescents’ family relationships, treatment
adherence, and metabolic control. Journal of Pediatric
Psychology, 31(9), 928–938.
Wysocki, T., Taylor, A., Hough, B. S., Linscheid, T. R.,
Yeates, K. O., & Naglieri, J. A. (1996). Deviation from
developmentally appropriate self-care autonomy.
Association with diabetes outcomes. Diabetes Care,
Zelikovsky, N., & Schast, A. P. (2008). Eliciting
accurate reports of adherence in a clinical interview:
development of the medical adherence measure.
Pediatric Nursing, 34(2), 141–146.
Zelikovsky, N., Schast, A. P., Palmer, J., & Meyers, K. E. C.
(2008). Perceived barriers to adherence among
adolescent renal transplant candidates. Pediatric
Transplantation, 12(3), 300–308.
Barriers in Adolescent IBD