Barriers to treatment of paediatric obstructive sleep apnoea: Development of
the adherence barriers to continuous positive airway pressure (CPAP) questionnaire
Stacey L. Simona,⇑, Christina L. Duncanb, David M. Janickec, Mary H. Wagnerd
aDivision of Behavioral Medicine & Clinical Psychology, Cincinnati Children’s Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH, USA
bDepartment of Psychology, West Virginia University, 1124 Life Science Building, P.O. Box 6040, Morgantown, WV 26506-6040, USA
cDepartment of Clinical & Health Psychology, University of Florida, P.O. Box 100165, Gainesville, FL 32610, USA
dDepartment of Pediatrics, Pediatric Pulmonary Division, University of Florida, P.O. Box 100296, 1600 SW Archer Rd., Gainesville, FL 32610, USA
a r t i c l e i n f o
Received 25 August 2011
Received in revised form 28 September 2011
Accepted 6 October 2011
Available online 14 December 2011
Obstructive sleep apnoea
Continuous positive airway pressure
a b s t r a c t
Background: Continuous positive airway pressure (CPAP) treatment is often prescribed for youth as a
treatment for obstructive sleep apnoea (OSA). Efficacy research in youth is limited, though some evidence
suggests that it may relieve symptoms of OSA and possibly prevent future physical, emotional, and
behavioural complications. However, the device must be used consistently for benefits to be realised.
Non-adherence to medical treatment is prevalent among youth with chronic illness, yet little is known
regarding adherence to CPAP in paediatric OSA.
Methods: Using a sample of 51 youth (age 8–17 years) recruited from a paediatric sleep specialty clinic,
the aims of the current study were to: (1) present descriptive data regarding CPAP adherence in youth
with OSA, and (2) develop a psychometrically sound measure of barriers for adherence to CPAP use for
youth with OSA.
Results: Results indicated that adherence to CPAP is poor: youth in the current sample used their CPAP on
average 3.35 h per night. The adherence barriers measure demonstrated excellent psychometric proper-
Conclusions: The adherence barriers to CPAP questionnaire has the potential to be a useful clinic-based
tool for identifying patient-specific issues with CPAP adherence in youth with OSA.
? 2011 Elsevier B.V. All rights reserved.
Treatment of obstructive sleep apnoea (OSA) with continuous
positive airway pressure (CPAP) therapy is common and limited
data suggest it may be effective at improving both objective and
subjective symptoms of OSA in youth [1,2]. However, the device
must be used consistently for benefits to be realised, and missing
even a single night’s use can cause significant health and behav-
ioural consequences .
Rates of non-adherence are as high as 50% for other paediatric
chronic illness treatment regimens  and adult CPAP treatment
, yet little is known regarding rates of CPAP adherence or spe-
cific factors related to adherence for youth with OSA. A compre-
hensive literature review revealed only three studies that
systematically examined adherence in children and adolescents
prescribed CPAP therapy [1,6,7]. Across these studies, youth dem-
onstrated poor average nightly rates of CPAP use, ranging from 5
to 7 h per night. Given that children require between 9 and 12 h
of sleep per night depending on age , it is likely that these chil-
dren were not using the device for the entire night’s duration.
However, reasons for non-adherence have not been sufficiently
To promote adherence, it is necessary to understand the spe-
cific barriers to adherence that youth and families are experienc-
ing. Several general and disease-specific adherence barriers
assessment measures have been developed for youth in the extant
literature. Generic measures, such as the Illness Management Sur-
vey , often focus on topics such as oral medication use that
are not salient to children with OSA and fail to fully encompass
the complexities of the CPAP regimen. Disease-specific measures
also have been designed for various medical populations: for
example, the Parent and Adolescent Medication Barriers Scale 
was designed for youth who have undergone organ transplants.
Disease-specific measures have the advantage of obtaining specific
barriers unique to the illness and treatment for which it was de-
signed. Unfortunately, no tools currently exist with which to as-
sess barriers to the CPAP regimen. Thus, a precedent and a need
exist for the creation of a barriers measure for CPAP use in youth
1389-9457/$ - see front matter ? 2011 Elsevier B.V. All rights reserved.
E-mail address: email@example.com (S.L. Simon).
Sleep Medicine 13 (2012) 172–177
Contents lists available at SciVerse ScienceDirect
journal homepage: www.elsevier.com/locate/sleep
There are a number of potential barriers to adherence that fam-
ilies may face with regards to their child’s medical regimen. Barri-
ers to adherence may be real or perceived and are specific to the
individual; many patients struggle with more than one barrier
[4,9]. Various studies have examined the relation between barriers
and adherence to medical treatments, and have found that children
experiencing a greater number of barriers are more likely to exhi-
bit poorer rates of adherence [11–14].
While no research exists in the paediatric literature, studies
have examined barriers to CPAP use in adult patients, primarily
focussing on side effects. More patient-reported side effects were
associated with poorer treatment adherence, with the most com-
mon reported being skin irritation, congestion, and mask air leaks
. A large study monitored 140 adults with OSA and found that
those patients classified as ‘‘intermittent’’ CPAP users reported
more adverse effects of CPAP use such as poor sleep, feeling
uncomfortable, claustrophobia, and congestion .
The adult literature is informative but does not necessarily re-
flect the barriers experienced by paediatric patients. Given the
importance of identifying barriers to adherence and the lack of a
disease-specific screening tool for youth with OSA, the current
study attempts to provide descriptive data on CPAP adherence in
a sample of youth with OSA, and to develop a psychometrically
sound measure with which to assess child and family barriers to
CPAP adherence: the Adherence Barriers to CPAP Questionnaire
(ABCQ). It is hypothesised that this new measure will evidence
strong psychometric properties.
A total of 51 children and adolescents aged 8–17 years and their
parent or guardian were recruited from an academic medical cen-
tre sleep specialty clinic in the southeastern United States. Fifty-
three families were contacted for participation in the study, of
which all agreed to participate (100%). Two families (4%) were later
excluded from the study as children did not meet eligibility crite-
ria. Inclusion criteria for study participation were: (1) a confirmed
diagnosis of OSA for at least 6 months by overnight polysomnogra-
phy (PSG) in a sleep lab and (2) physician prescribed CPAP for at
least 6 months. Families were excluded from the study if they
had significant cognitive impairments that precluded completion
of study questionnaires, or a major co-morbid medical diagnosis
unrelated to the child’s OSA (i.e., cancer).
A power analysis was conducted to obtain an optimal number of
participants to afford sufficient power for planned statistical analy-
ses. Using an effect size estimation based on planned contrasts to
yield a medium level effect (f2= 0.20), results indicated that a sam-
ple size of 65 would produce a power of 0.80, as recommended by
Cohen . Given the final sample of 51 participants and an antici-
pated medium effect size, calculated power is actually 0.66.
The study was approved after review by the governing institu-
tion’s Institutional Review Board. Participation in the study took
place at the child’s regularly scheduled clinic appointment and
lasted approximately 30 min. Two weeks after the initial study vis-
it, families were sent an additional questionnaire for test–retest
purposes and a self-addressed stamped envelope to complete
and return by mail.
After completing the study-related measures, families received
a $5 store gift card at their initial clinic visit and another $5 gift
card after returning the questionnaires by mail.
As the primary measure of interest, the ABCQ was developed for
the purpose of this study to assess child and family barriers to
adherence to the CPAP treatment regimen. Separate child and par-
ent versions included items across a number of conceptually de-
rived domains, including:side
attitudes and beliefs, health-care provider relationships, psycho-
logical and behavioural concerns, social and family support, and
equipment and environmental factors. Based on a comprehensive
review of the literature, approximately 50 potential items were
generated across these domains. The measure underwent careful
review by physicians, nurses, paediatric psychologists, and psy-
chology graduate students, all with experience working with chil-
dren with chronic illness. Based on their feedback, the measure
was culled to 31 items. The Flesch–Kincaid readability scale 
was used to determine a grade reading level of 2.7 and 3.2 for
the youth and parent versions, respectively, making it appropriate
for the age range of the study.
Using this list of items, five youths and their parents who met
the study’s inclusion and exclusion criteria were interviewed after
completing the ABCQ to provide feedback regarding their ability to
read and understand directions and items and to ascertain whether
all pertinent barriers were being tapped by the items constructed.
Based on their feedback, the Likert-type scale was changed from
frequency of occurrence to strength of agreement for each item
in order to reduce confusion. No concerns were raised regarding
wording or item content. No other potential adherence barriers
were identified for inclusion in the measure, and none of the exist-
ing items were selected for deletion.
Instructions normalised non-adherence and informed partici-
pants to answer each item for strength of agreement over the pre-
vious 2-week period using a five-point Likert-type scale ranging
from ‘‘strongly disagree’’ to ‘‘strongly agree.’’ A total barriers score
was calculated using the sum of all item responses, with higher
scores indicating more barriers.
2.3.2. Beliefs about medicine scale
The BAMS assesses health beliefs about medical treatment for
youth and parents. The original measure was created for patients
prescribed oral medications with a variety of medical diagnoses,
but items were revised for this study, substituting ‘‘CPAP’’ instead
of ‘‘medications.’’ The measure consists of 59 items rated on a se-
ven-point Likert-type scale; items were derived from constructs
related to the health belief model and other theories of health be-
liefs. Subscales were supported by confirmatory factor analysis and
include perceived threat (i.e., perceived susceptibility), positive
outcome expectancy, and negative outcome expectancy (i.e., per-
ceived benefit). The BAMS has demonstrated excellent internal
consistency (alpha = 0.79–0.87) and test–retest reliability (0.71–
0.77) in a sample of youth with human immuno-deficiency virus
(HIV), inflammatory bowel disease, or asthma  The measure
has also been adapted for parents of youths with sickle cell disease
. The measure as adapted for OSA maintained adequate inter-
nal consistency for both parents (alpha = 0.74) and youths (al-
pha = 0.85) with the current sample. For purposes of analyses,
the negative outcome expectancy scale was used in the current
2.3.3. PedsQL health-care satisfaction generic module 
The overall satisfaction domain of this measure was used to as-
sess parents’ general satisfaction with their child’s health care.
Respondents rated how content they were for each of the 24 items
using a five-point Likert-type scale ranging from ‘‘never satisfied’’
S.L. Simon et al./Sleep Medicine 13 (2012) 172–177
to ‘‘always satisfied.’’ Scale scores were calculated using the sum of
the items divided by the number of items answered in order to ac-
count for missing data, with higher scores indicating higher satis-
faction. The PedsQL health-care satisfaction generic module was
adapted for general use from the original module, designed for
the haematology/oncology population, which has demonstrated
excellent psychometric properties, including high internal consis-
tency (alpha = 0.96) . Similar findings were seen using the cur-
rent population (alpha = 0.98).
2.3.4. Adherence to CPAP
Data from participants’ CPAP machines were obtained via elec-
tronic download to provide objective information on adherence to
treatment. Electronic monitoring is considered the ‘‘gold standard’’
of adherence measurement and provides the advantage of assess-
ing continuous, long-term adherence as it occurs . Electronic
monitoring of CPAP use has been used routinely in paediatric
OSA research (e.g., Refs. [7,23]).
Adherence data were stored on a computer chip in the CPAP
machine and downloaded using special computer software, which
generated specific usage information. As the standard of care prac-
tice for patients in our clinic, patient usage information was ob-
tained approximately every three months. For the purpose of this
study, data obtained at their clinic visit for the period prior to study
participation were examined, and average daily usage for all days
in the monitoring period (on average 90 days) served as the pri-
mary measure for analyses.
2.3.5. Other measures
In addition, parents completed a demographic form to provide
relevant background information such as child and parent age,
gender, race, and family income. Patient medical charts were re-
viewed to obtain PSG results and their prescribed treatment plan.
2.4. Statistical analyses
All data analyses were conducted through use of the Statistical
Package for the Social Sciences 15.0 (SPSS). Data were examined to
determine skewness and kurtosis of the sample for the variables of
interest. Normality assumptions were considered met if the z-
scores for skewness and kurtosis were within ±1.96. If assumptions
were violated, non-parametric tests were performed. Listwise dele-
tion was used to account for occasional missing data.
3.1. Sample characteristics
The mean age of the 51 children who completed the study was
13.26 years (SD = 2.45), of which 51% were male. Fifty-one percent
identified themselves as non-Hispanic Caucasian, 37% as Black or
African American, and an additional 12% identified as from other
racial or ethnic backgrounds. Caregivers were primarily mothers
(70%) with a mean age of 41.27 (SD = 9.76), and 44% were from
two-parent households. The sample was primarily of low socio-
economic status (median annual income level of $20 k–30 k) and
most patients were covered by Medicaid (64%), while the remain-
der had either private insurance (22%) or selected ‘‘other/none’’
The health status of patients in this study varied substantially,
but youth on average had severe OSA (Apnoea–Hypopnoea Index
M = 16.68,SD = 21.47).Approximately73.5%ofthesamplewasclas-
sified as either overweight or obese (body mass index [BMI] at or
above the 85% percentile for age and gender). Parents reported that
68% of youth had been diagnosed with either attention-deficit
hyperactivity disorder (ADHD) or a learning disability, which have
been shown to be more common in youth with OSA.
3.2. CPAP adherence
Information on the type of CPAP device and manufacturer,
mask-type and home health-care provider are described in Table 1.
One-way analysis of variance (ANOVA) and independent sample t-
tests analyses were performed to determine if there were any dif-
ferences in adherence by equipment type. No differences were
found by device type (e.g., CPAP, auto-PAP, or BiPAP; F[4,
43] = 0.69, p = 0.60), device brand (F[2, 44] = 1.09, p = 0.35), mask
type (t = 0.45, p = 0.66), or home health-care provider (F[3,
43] = 2.34, p = 0.09). Patients in the study had been prescribed
CPAP for an average of 22.91 months (SD = 18.25; range = 6–94).
A significant positive relationship was found for adherence and
time-prescribed CPAP such that adherence increased with length
of time-prescribed CPAP (r = 0.35, p = 0.01).
Adherence downloads were obtained for the most recent period
available prior to their clinic appointment (Mean duration of
adherence data = 89 days, SD = 86.49; Median = 59 days). Overall,
adherence generally was poor. Across all days in the monitoring
period, youths used their CPAP for an average of 3.35 h per night
(SD = 2.79). Considering only the days in which the CPAP was used,
average use was 5.01 h per night (SD = 2.51). Youths used CPAP for
at least 4 h per night on an average of 41% of days monitored
(SD = 35.0). See Table 2 for additional adherence information.
3.3. Psychometrics of the ABCQ
A Cronbach’s alpha coefficient which evaluates homogeneity of
the test items and the extent to which items correspond to the
same construct was calculated to test internal consistency . Re-
sults demonstrated excellent internal consistency, youth al-
pha = 0.89 and parent alpha = 0.90. Item-total correlations were
above 0.3 for all but four of the items for youth and two of the
items for parents, indicating most items are consistent with the
rest of the measure. Deleting these items did not increase alpha
by a meaningful amount (up to 0.006 for youth and up to 0.004
for parents); consequently, they were retained in the measures.
Test–retest reliability was examined using Pearson product–
moment correlations based on questionnaire responses at the ini-
tial visit and 2-week post-test. Paired t-tests were performed to
evaluate whether there was a statistically significant change in
scores from initial testing to 2-week post-test. A third (n = 16;
31.3%) of the sample returned the questionnaire mailed to them
Percentage of sample (%)
Home healthcare provider
Pediatric health choice
Barnes option care
Home respiratory solutions
S.L. Simon et al./Sleep Medicine 13 (2012) 172–177
after their initial assessment. Correlations revealed excellent test–
retest reliability for the baseline and 2-week assessment of the
ABCQ, with correlations of 0.81 (p = 0.001) and 0.73 (p = 0.001)
for youth and parent versions, respectively. In addition, the paired
t-tests showed change across time was not significant, t(14) = 0.95,
p = 0.36 (youth), t(15) = 0.74, p = 0.47 (parents).
To assess convergent validity, correlations were conducted be-
tween the ABCQ total scores and each variable of interest. Specifi-
cally, Pearson product–moment correlations were run for normally
distributed variables (CPAP adherence), while Spearman correla-
tions were used for non-normal variables (health-care satisfaction
and negative outcome expectancy). Scores from the ABCQ demon-
strated adequate convergent validity. Having greater barriers to
adherence was associated with poorer rates of adherence (mean
daily usage for all days) for both parent (r = ?0.44, p = 0.002,
N = 48) and youth (r = ?0.44, p = 0.002, N = 48). Greater barriers
to adherence was also associated with lower ratings of health-care
satisfaction for parents (r = ?0.32, p = 0.02, N = 51) and youths
(r = ?0.68, p = 0.001, N = 51). Finally, more barriers to adherence
were associated with greater negative outcome expectancy as
measured with the BAMS (parent: r = 0.64, p = 0.001, N = 51;
youth: r = 0.40, p = 0.004, N = 51).
3.4. Descriptive data for ABCQ
Both youth and parents endorsed a moderate number and di-
verse range of barriers (Youth: M = 70.98, SD = 17.72; Parents:
M = 60.89, SD = 16.54; maximum possible = 155). The most fre-
quently endorsed barriers to CPAP were similar for parents and
their children (Table 3). Almost half of the families reported ‘‘not
using CPAP when away from home’’ as a top barrier. Youth appear
to have negative emotional reactions with regards to illness and
treatment, with 43% of children and 24% of parents citing that they
‘‘just want to forget about OSA’’ and over 20% of families state the
child is ‘‘embarrassed about using CPAP.’’ Despite the low average
socio-economic status (SES) of the sample, only 22% of children
and 5.9% of parents agreed that CPAP equipment cost was a barrier.
Illness-related knowledge was not a significant barrier, given that
0% of parents and less than a sixth of youth reported difficulty in
understanding why they have to use CPAP or how to use the CPAP
machine. Other barriers endorsed can be classified into several cat-
egories: Side effects (not using CPAP when child does not feel well),
daily hassle (forgetting; not using CPAP when away from home)
and social support (no one available to help use CPAP at night).
OSA is increasingly prevalent in children and adolescents and
can affect both daytime and nighttime functioning [8,25]. Because
of the potential serious negative consequences (e.g., cardiovascular
morbidity, cognitive and behavioural problems) of the disease,
consistent management with nightly use of a CPAP device is imper-
ative. Similar to other chronic illness treatment regimens, adher-
ence to CPAP has been documented to be poor in adults [4,5,26].
Yet, a paucity of studies have examined rates of CPAP adherence
in youth with OSA, and the variables that may account for non-
adherence are unknown. Knowledge of specific barriers to adher-
ence is vital to inform interventions; yet, no measures previously
existed with which to obtain this information from families and
children with OSA. The current study builds upon previous work
in the extant literature by describing rates of adherence in youth
with OSA and developing a measure of barriers to adherence.
Overall adherence for youth in the current study was poor,
which is consistent with previously reported adherence for chil-
dren with OSA. This is particularly worrisome, given the severe dis-
ease status of the study sample. Across three extant studies
examining CPAP adherence [1,6,7], usage ranged from 4.7 to 7 h
per night, and most children did not use their CPAP every night
as prescribed. These rates are somewhat higher than youth in the
current study, where average nightly usage was 3.35 h for all
nights in the monitoring period. The reasons for higher rates in
the previous studies may be due to the nature of those studies.
Specifically, one study  followed children newly prescribed CPAP
for their first six months of use when adherence may be higher due
to novel aspects of treatment, while the current study required
youths to have been prescribed CPAP for at least six months to
Months prescribed CPAP
Mean daily CPAP usage – all days monitored (min)*
Mean daily CPAP usage – only days used (min)*
Mean CPAP pressure*
Time in leak (min)*
% Days used P4 h*
Note: Apnea–hypopnea index: 1–4 = mild; 5–10 = moderate, 11+ = severe.
*Information obtained from CPAP device download of electronic monitoring data.
Most frequently endorsed barriers to CPAP reported on the ABCQ.
Does not use when away from home
Child not feeling well
Child does not feel like using CPAP
Child just wants to forget about OSA
Child embarrassed about using CPAP
Does not use when away from home
Just want to forget about OSA
Not feeling well
No one helps to use CPAP at night
Embarrassed about using CPAP
Note: Indicates percentage of sample endorsing ‘‘Agree’’ or ‘‘Strongly Agree’’; ABCQ = Adherence Barriers to CPAP Questionnaire.
S.L. Simon et al./Sleep Medicine 13 (2012) 172–177
participate. The other two studies [6,7] examined children after
participation in intervention programmes that may have influ-
enced adherence rates, while children in the current study received
standard clinic care. Despite these differences, it is clear that youth
are not using their CPAP every night, for the entire night’s duration
as prescribed. In addition, Uong and colleagues  reported that
parents of children with poor adherence tend to be poor estimators
of their child’s CPAP usage, indicating that parents may not be
aware of the extent to which non-adherence is a problem.
The ABCQ demonstrated excellent psychometric properties,
including internal consistency, test–retest reliability, and conver-
gent validity. This measure is the first to examine child- and par-
ent-reported barriers to adherence to the CPAP regimen. As
predicted, both parents and youth endorsed many barriers across
a diverse range that prevented them from following the CPAP reg-
imen. This finding is similar to previous studies examining barriers
to chronic illness. For example, Modi and Quittner  found that
over 70% of parents and children with cystic fibrosis and asthma
endorsed barriers to adherence to their respective treatment regi-
mens. The ABCQ is a brief tool that could be easily administered
and scored in a medical clinic by health-care personnel to deter-
mine those obstacles to adherence most salient to families. After
identifying these barriers, the medical team can work with families
on the issues important to them to improve future adherence (e.g.,
through family-centred problem solving). Further study is needed
to determine the effectiveness of using the measure as a screening
tool and as a measure of treatment outcome for intervention ef-
forts in a clinic setting.
Significantly, both parents and youth endorsed many barriers
that could be targeted in cognitive–behavioural interventions.
Interventions focussed on problem solving may be beneficial to ad-
dress practical barriers such as forgetting. Individual and family-
based programs could help youth with negative feelings regarding
illness and treatment, and a group format could allow families to
compare shared experiences and challenges. Given that youth with
chronic illness are at greater risk for psychological problems than
their healthy peers [22,27], providing appropriate intervention to
promote both physical and emotional well-being may be a benefi-
cial preventative measure.
There are several limitations to the current study that deserve
consideration. The study sample was a clinic-referred population;
indeed, on average, youth had severe OSA. Parents who attend a
sleep-speciality clinic have specific concerns regarding their child’s
OSA and may not be representative of the general population of
children receiving care through a paediatrician. In addition, partic-
ipants were recruited during their clinic appointment, during
which adherence is typically discussed. Thus, social desirability
may result in a tendency to report better than actual functioning.
It is also necessary to consider the families that were unable to par-
ticipate in the study due to not attending their scheduled clinic
appointments. Our results may actually underestimate true levels
of non-adherence given that families not attending clinic were un-
able to be assessed. In the current sample, youth who had been
prescribed CPAP longer had better rates of adherence and it was
not possible to standardise the length of time following diagnosis
when adherence data were obtained. It is possible that youth
who used CPAP consistently were more likely to be assessed at
these later time periods, while CPAP treatment may have been dis-
continued for families who were chronically non-adherent. Poten-
tially, these families may have been more responsive to the
standard of care efforts of the medical team to address poor adher-
ence. For example, physicians typically review adherence down-
loads with families at each clinic visit, and the home health-care
providers are consulted to make adjustments if problems with
equipment arise. Finally, CPAP downloads were obtained per usual
standard of care for the clinic, which resulted in lack of a consistent
duration for adherence data.
This study highlights the importance of identifying barriers to
adherence for children with OSA who have been prescribed a CPAP
regimen. With the technological advances in CPAP machine design,
it is possible for health-care practitioners to easily identify non-
adherent youth via electronic download data. However, once this
information is obtained, it is unclear how best to assist patients
and families in improving adherence. To date, no behavioural inter-
ventions have been developed or examined for youth with OSA.
Identifying barriers to adherence is important to aid in the develop-
ment of empiricallybased interventionprogrammes,or to helppro-
viders identify and address specific issues salient for individual
patients. Use of the ABCQ as a screening device in the clinic setting
is an easy and fast way to assess specific issues salient to patients.
Inquiring about a family’s beliefs regarding their illness and treat-
ment could illuminate concerns or issues that can then be ad-
dressed. While this study is an excellent foundation for enhancing
our knowledge of barriers to adherence in youth with OSA, further
research is imperative to better understand the difficulties children
and families have with their CPAP regimen, as well as developing
successful interventions to promote positive health outcomes.
Conflicts of interest
The ICMJE Uniform Disclosure Form for Potential Conflicts of
Interest associated with this article can be viewed by clicking on
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