Development and usability testing of a self-management intervention to support
individuals with obstructive sleep apnea in accommodating to CPAP treatment
Suzanne S. Dickerson, DNS, RNa,*, Rana Obeidat, PhD, CNS, RNb, Grace Dean, PhD, RNa,
Alan Aquilina, MDc, Eric Ten Brock, MDd, Patricia Smith, NPe, Carla Jungquist, PhD, RNa
aUniversity at Buffalo, School of Nursing, 105 Wende Hall, 3435 Main Street, Buffalo, NY, USAbZarqa University, Faculty of Nursing, 257D Khawarezmi Building, JordancClinical Medicine, University at Buffalo, School of Medicine, Buffalo, NY, USAdSection of Pulmonary, Critical Care & Sleep Medicine, Department Medicine, Buffalo General Hospital, Buffalo, NY, USAeDepartment Medicine, University at Buffalo, School of Medicine, Buffalo, NY, USA
article info
Article history:
Received 10 December 2012
Received in revised form
9 July 2013
Accepted 9 July 2013
Keywords:
OSA
CPAP adherence
CBT
Complex intervention
Usability testing
abstract
Objective: Development and usability testing of a self-management intervention to promote CPAP
adherence.
Background: While CPAP is an effective treatment for OSA, patient adherence is sub-optimal. Qualitative
interviews and evidence based approaches were used in development.
Methods: The initial steps in the Campbell (2000) Framework for complex intervention guided devel-
opment of the intervention in book format. After sleep expert review and modi ?cation, CPAP users
reviewed the format and content of the intervention and were interviewed by telephone using a “talk-
out-loud technique “to determine usability. The interviews transcripts were analyzed thematically.
Results: Ten participants with varying ages, race, education, and CPAP usage, found the intervention
contained useful information to understand their diagnosis, to problem-solve, and monitor their prog-
ress. Suggestions included minor format changes and the wish that they had access to the intervention
when ?rst diagnosed.
Conclusion: This intervention provides a multimodal approach including education, self-management
tools, cognitive restructuring, provider communication guides, and peer stories of success that may be
helpful in initiating active problem solving to improve self-ef ?cacy to adhere to CPAP. Future research
plans include clinical testing in a RCT with new CPAP users. 2013 Elsevier Inc. All rights reserved.
Introduction
Continuous positive airway pressure (CPAP) devices worn
nightly effectively treat symptoms of obstructive sleep apnea
(OSA)
1resulting in improved sleep and reduced daytime sleepi-
ness. However, treatment adherence has been reported as low as
27% to a high of 54%.
2,3Over the years, research studies have
focused on factors predicting adherence. In a review of the litera-
ture by Olsen et al,
4predicting adherence is associated with im-
provements in daytime sleepiness, severity of disease, lower CPAP
pressures, higher body mass index (BMI), and higher level of edu-
cation; however, these factors account for only 10 e15% of the
variance in predicting adherence. Thus there is still a need to un-
derstand what motivates adherence. In a recent systematic review of the evidence on adherence by
Sawyer et al,
5factors that in ?uence adherence were identi ?ed: (1)
disease severity (airway patency, nasal resistance, and severity
level of apnea hypopnea index, oxygen desaturation levels, and
daytime sleepiness), (2) patient characteristics (personality type,
mood, depression, race and socioeconomic status SES), (3) patient
experiences with titrating appropriate pressures and use of auto
titration devices, (4) device side-effects (mask ?t and comfort), and
claustrophobia, and (5) psychological (self-ef ?cacy, expectations)
and social support factors.
5Other factors related to psychological
issues include knowledge of treatment and disease which in-
? uences risk perception, coping styles which may contribute to
active problem solving, as well as, the experience of the bed part-
ners improvement in sleep quality with treatment. This review also
suggests proactive coping styles are more likely to increase
adherence.
5,6
Some of these factors that in ?uence adherence have been used
in the design of interventions.5Most of the previous interventions* Corresponding author. Tel.: þ1 716 829 3254.
E-mail address: [email protected] (S.S. Dickerson).
Contents lists available at ScienceDirect
Heart & Lung
journal homepage: www.heartandlung.org
0147-9563/$esee front matter 2013 Elsevier Inc. All rights reserved.
http://dx.doi.org/10.1016/j.hrtlng.2013.07.011
Heart & Lung 42 (2013) 346 e352
included educational approaches that were only effective with the
addition of expensive and intensive clinician support in a one-
to-one or group format.
5The evidence suggests that important
components to promote CPAP adherence should include: patient
education about OSA, diagnostic information, symptoms, and
outcome expectancies for daily management, goals for use (hours
per night), anticipatory guidance for trouble-shooting problems,
assistance with initial exposure, inclusion of a support person,
opportunities to contact others who have used CPAP, resources for
problem solving, and follow up with sleep providers,
5as well as,
self-management approaches that add components of skill devel-
opment and peer support.
7Self-management approaches may
include self-monitoring of symptoms or physiologic processes,
decision making, and problem solving.
7Other research has shown
that cognitive behavioral therapy (CBT) and elements of self-
ef ?cacy showed some effectiveness.
3,7 e9The evidence supports a
complex multifactorial approach that focuses on improving
knowledge of the need for CPAP, improving self-ef? cacy, evaluation
of barriers, and developing behavioral strategies to improve
adherence rates which can be cost effective and easy to implement. To understand the dif ?culties with adherence from the patient ‘s
perspective, a qualitative study of newly diagnosed patients ac-
commodating to CPAP was conducted.
6Patients described their
need to persevere through the initial tribulation in an attempt to
develop a positive mindset to accommodate CPAP use into their
lives. The patients who were ultimately successful in adhering to
CPAP described their initial troubles and recurring frustrations with
getting used to the device. They also described dif ?culty in recog-
nizing the subtle improvements from using the device that sug-
gested implementing self-monitoring and feedback approaches to
help patients recognize improvement. Successful patients learned
to access help in problem solving to make CPAP use a part of their
daily routine. The patients ‘stories, while unique, often had com-
mon similarities that demonstrated an array of approaches to self-
management that assisted in accommodating CPAP use into their
daily lives. The patient stories and experiences provided “real life ”
meanings and practical knowledge of how they managed their
CPAP from their lived experiences. Therefore, insight was gained to
facilitate development of what we call a qualitatively derived
meaning-based intervention that supports using complex and
multifactorial contextual patient meanings of CPAP use that
emerged from the qualitative interviews. Thus using the evidence, we proposed targeting patients early in
the treatment trajectory with a meaning-based intervention that is
contextually appropriate to their experience, which addresses an
array of approaches for self-care management to improve adherence to the CPAP. Therefore, the purpose of this paper is to
describe the development of an intervention guided by the
Campbell Framework for Design and Evaluation of Complex In-
terventions,
10and the initial usability testing of a self-care man-
agement intervention in a book format that may provide a cost
effective tool to support self-management for individuals with
newly diagnosed obstructive sleep apnea who are prescribed CPAP
treatment.
Methods
This project took part in two phases: the development of
intervention materials and the subsequent evaluation of the
intervention ?rst by expert review and subsequently by a usability
testing in two groups of CPAP users.
Phase one-development to intervention
Guiding framework The development of this intervention was guided by the
Campbell Framework for Design and Evaluation of Complex In-
terventions ‘? rst two levels of preclinical and modeling phase.
10 e12
This framework has been commonly used in the United Kingdom
(UK) to design health related programs to solve complex health
problems such as: an online behavioral intervention for individuals
with cardiovascular disease; delay of symptomatic patients ‘pre-
sentation to providers for a diagnosis of lung cancer; and case
management to reduce emergency hospital admissions.
11Table 1
outlines the Campbell Framework for Development and Evalua-
tion of Complex Interventions, in context with the entire process
toward ?nal implementation.
Complexity refers to the number of interacting components, the
dif ?culty of behaviors to be changed, the variability of outcomes
and the degree of ?exibility needed.
12CPAP adherence is a multi-
dimensional problem that is congruent with this approach that
affords the ability to combine interacting components into a com-
plex intervention.
Development of the self-management intervention
The problem of CPAP adherence was de ?ned and quanti ?ed
during the initial conceptualization of the problem for the inter-
vention. Table 2summarizes the problem and key tasks. Identi ?-
cation of theoretical and/or empirical evidence of intervention
effectiveness is a critical step in developing the self-management
program.
10 ,12The initial development of this meaning-based
Table 1
A phased approach to develop a complex intervention to guide the research process toward implementation.
Phases Tasks
Preclinical phase
Identify problem and theoretical approach Identify and quantify the problem, who would bene ?t from an intervention, how to best approach
the problem, and determine expected outcomes.
Theory is explored to develop intervention including both qualitative and quantitative evidence.
Phase 1
Combine evidence to develop components and outcomes Identify components of the intervention from the evidence based literature.
Determine how the components interact, and in ?uence the outcome.
Conduct a usability study to evaluate content and form for appropriateness by expert and
ultimate user input.
Phase 2
Feasibility study Determine ef ?cacy in an exploratory trial of the intervention and protocol.
Phase 3
Randomized control trial Determine the effectiveness of the protocol by de ?nitive randomized controlled
trials to compare intervention to appropriate alternative.
Phase 4
Implementation Determine if intervention is reliably in uncontrolled settings in practice.
Framework for design and evaluation of a complex intervention. Modi ?ed from Campbell 2000.
10
S.S. Dickerson et al. / Heart & Lung 42 (2013) 346 e352 347
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program was informed by the qualitative work conducted by the
?rst author to understand support and motivational needs of pa-
tients who are prescribed CPAP treatment.
6Blackwood, O ‘Halloran
and Porter16suggest that qualitative strategies can be used to
inform the development and evaluation of an intervention, and to
understand the contextual factors that promote or inhibit the
effectiveness of an intervention. These contextual factors include
the meanings of cultural interpretations and preferences of the persons involved that in
?uence tendencies toward effectiveness,
thus identifying patterns of practical knowledge and strategies. The
? ndings of the authors ‘qualitative study portrayed successful users
as developing a positive mindset, persevering through the initial
week of use, developing problem solving skills by accessing re-
sources, gaining strategies from expert users, and becoming
educated and active problem solvers. Those that did not adhere to
the CPAP treatment exhibited lack of information about the
Table 2
Identifying problem and key tasks.
Key task CPAP adherence
De ?ne and quantify the problem Untreated obstructive sleep apnea (OSA) leads to arterial oxygen
desaturation, sleep fragmentation and daytime sleepiness, cognitive
de?cits and increased risk for hypertension, stroke, anxiety depres-
sion and risks for accidents.
13
Sleep professionals diagnose and prescribe CPAP treatment.
Patients are required to adhere to treatment; however, adherence is
suboptimal at 27 e54%.
3
Identify and quantify the population most affected and at risk and likely
to bene ?t
OSA prevalence e9% of middle aged men and 4% of middle aged
women.
OSA common in patients with hypertension, cardiac arrhythmias, or
congestive heart failure.
14
CPAP treatment is effective in reducing risk in patients.
Understanding pathways by which the problem is caused and sustained Treatment adherence factors related to patient:
Risk perception, symptom experience, self-ef ?cacy, outcome
expectations, family support and involvement, health care
professionals support.
5
Initial experience of CPAP trial during the ?rst few nights.15
Are these pathways amendable to change and at what point(s) Patient education, self-ef ?cacy and supports are amenable to change
with education, cognitive behavioral approaches and supports from
signi ?cant others and health care providers.
5
Book format may be cost effective way to inform and provide tools to
empower patients.
Quantify the potential for improvement With ongoing adherence problems, there is potential for improving
adherence and prevent subsequent risk.
Table 3
CPAP self-management intervention components and associated theories and evidence.
Table of contents Theories and evidence Component interaction
Information to understand diagnosis What is sleep apnea?
What is sleep study measure
Effect of prolonged sleep deprivation
Symptoms of OSA
Educational information on health promoting aspects
of CPAP
Message framing of consequences framed as negative
messages
18
Associate symptoms with OSA (qualitative
evidence)6,17
Education provides understanding of consequences
and decision making5
Impact of educational messages18
Beliefs and outcome expectancies19
Trouble shoot problems with CPAP
Issues and ways to ?x
Mask trouble
Active coping by suggestions from CPAP users
(qualitative evidence and practical advice to trouble
shoot)
6
Claustrophobia and desensitizing20
Encouraging attempts
Encouraging active coping and problem solving
Self-management skills to act on problem
7
Information available if encounter problems
Tools to check progress noting subtle changes Sleepiness scale
Symptom checklist
Self-monitor sleep habits
Healthy sleep habits
Family feedback
Self-monitoring progress and positive outcomes
7
Self-ef ?cacy theory19,21,22
BEnactive mastery experiencesBPerformance accomplishments as indicators of
success
Involving family and bed partners in assessing out-
comes to verify subtle improvements from sleep
deprivation (qualitative evidence)
6,23,24
Self-ef ?cacy overcome negative sleep behaviors25
Emotional and physical arousal: Judging capacity by
relying on physiological and affective states19
Social support social and verbal persuasion,21skill
development in managing sleep
Making it part of your routine Troubling thoughts and re-framing thoughts
Check response to events
Cognitive behavioral approach
8,26to overcome
negative attitude (if present) and assess responses
to stress
CBT reframing to positive thoughts from successful
CPAP users
Things to ask your provider Set of questions to ask providers and vendors on
equipment issues
Self-management approach to provide skills on pro-
vider and vendor communication
6
CPAP user stories
Male 53 using 10 years
Retired man using 4 weeks
Working man
Female teacher using 3 months
Written testimonies of successful users with stories
of persisting and overcoming dif? culties to make it
routine
BTestimonies from various people, gender and
initial symptoms
Practical advice from successful users on trouble
shooting and ways to accommodate into everyday
sleep with CPAP device
Self-ef ?cacy theory
21
BVicarious experiences
Stories modeling the successful CPAP users transmit
competency and comparison for achievement
Peer advice
7
S.S. Dickerson et al. / Heart & Lung 42 (2013) 346 e352
348
expected outcomes, and trouble with the initial trial.6Similar
themes emerged from a mixed method study that described dif-
ferences of adherent and non-adherent CPAP users including:
perceptions of risk, ability to identify own symptoms pre- and post-
treatment, positive attitude and outcome expectations, importance
of social support and persistence with treatment or perceived self-
ef ?cacy.
17
Reviewing evidence based literature
As part of the modeling and theory based phases of developing
an intervention, a review of the evidence based literature also
assisted in de ?ning the theoretical approaches congruent with the
patient experiences and challenges. The evidence and theories used
are cited in Table 3delineating the intervention components.
The principles of cognitive behavioral treatments (CBT) and the
theory of self-ef ?cacy and, self-management were also used in the
development of the intervention because they were complemen-
tary to the meaning-based approaches described in the qualitative
studies.
6,17
Selected theories used in the development of the intervention
Cognitive behavioral therapy (CBT)
CBT treatments use structured goal oriented approaches to focus
on the problems faced by the individuals, which help them to
recognize and cope with issues by fostering learning of effective
strategies to problem solve, manage and use appropriate sup-
ports.
27Problems and solutions identi ?ed in the interpretation of
the qualitative interviews provided real life language to structure
the reframing of issues into positive statements from expert pa-
tients that added face validity to the content.
Self-ef ?cacy
Self-ef ?cacy is de ?ned as a persons ‘belief about their ability to
take action to achieve a speci ?c goal.
21Using self-ef ?cacy theory, the
key components include ef ?cacy beliefs, behavior, outcome expec-
tations, and outcomes that would encourage persons to persevere.
Self-ef ?cacy beliefs are strengthened by the following strategies:
performance accomplishment (adherence to CPAP use), vicarious
experiences (success stories from users), social or verbal persuasion
through CBT, and emotional and physical arousal (monitoring suc-
cesses). The subsequent source of outcome expectations come from
a given course of action (use of CPAP), which takes the form of
positive or negative physical, social, and self-evaluative effects from
self-monitoring.
19,21Ta bl e 3 summarizes the components of the
program and related evidence and theories. After initial develop-
ment of the intervention, we sought feedback on the relevance, and
validity of the intervention from a group of six sleep practitioners (4
sleep specialists, 2 nurse practitioners). We revised the intervention
based on the feedback given by the expert review.
Phase 2 eevaluation of the program
Method of usability testing Usability testing is a technique used to evaluate an intervention
by having users directly test it to see if it accomplishes its intended
purpose and is easy to use. During the usability testing, the goal is
to elicit qualitative feedback from the intended users by using
” think out loud “techniques and verbal probes to understand how
users interpret the content. This technique helps identify relevant
components (content and format) and potential barriers to the
implementation (such as appropriate reading level) and effective-
ness of the intervention.
10This technique is also used in instrument
development and involves cognitive interviewing to determine
how future respondents will interpret questionnaire items.
28
Usability testing is also used in web based evaluations.29We
introduced the intervention book to two groups of CPAP users (each
with 5 participants) recruited from a sleep clinic. The initial 5
participants were interviewed for their reactions and thinking
process after reading the book. Then modi ?cation and clari ?cations
were made to the book before the ?nal 5 were interviewed.
Participants and setting A convenience sample of CPAP users at a local sleep clinic were
recruited for the usability study. Criteria for inclusion were current
CPAP users who have knowledge of CPAP use and the challenges of
adherence, as well as newly diagnosed CPAP users who would re-
view from the perspective of a new user. The goal was to reach a
variety of CPAP users in terms of experience, age, gender, education,
and race to broaden the perspectives on the usefulness of the
intervention in understanding the diagnosis and managing CPAP
use. The study was explained by the ?rst author, consent was ob-
tained, and then participants were asked to review the intervention
book at home. Participants were called by phone within the next
48 hours at a time convenient to them and were interviewed using
individual semi-structured talk out loud technique.
28,30After the
interview, the participants mailed the book back to receive a $30
gift card.
Table 4
Clinical and demographic characteristics of usability study participants.
Characteristic Mean (SD), range
Age 42.7 (13.4), 24 e61
BMI 39.9 (6.6), 28e53
Gender N(%)
Male 4 (40)
Female 6 (60)
Race African American 3 (30)
White 7 (70)
Marital status
Single 2 (20)
Divorced 2 (20)
Married 6 (60)
Education HS and lower 4 (40)
Some college 3 (30)
College 3 (30)
Occupation
Full time 5 (50)
Unemployed 4 (40)
Student 1 (0)
Symptoms Snoring 10 (100)
Stop breathing 6 (60)
Daytime sleepiness 7 (70)
High blood pressure 6 (60)
Restless sleep 10 (100)
Can ‘t fall asleep 6 (60)
Sleep walk 1 (10)
Smoking history Never 5 (50)
Smokers 4 (40)
Quit 3 (30)
Still smoke 1 (10)
Sleep apnea severity eself-identi ?ed
Moderate 4 (40)
Severe 6 (60)
Length of time using CPAP Just start 4 (40)
1 e 6 months 5 (50)
3 years 1 (10)
Adherence eself-identi ?ed
Non-compliant 2 (20)
Not started yet 4 (40)
Compliant 4 (40)
S.S. Dickerson et al. / Heart & Lung 42 (2013) 346e352 349
Table 5
Qualitative comments from participants.Component Comments group one Group two
Information to understand diagnosis “It would be great to have this before your
?rst doctor visit so
you can scale yourself. ”
“I liked knowing that people with severe sleep apnea are more
at risk for car accidents because people wouldn ‘t; normally
know that epeople might think it ‘s a minor thing but the risk of
actually dying might encourage people to actually stick with the
program. ”
“Put symptoms before good news to go with the ?ow. ”
“I think the humor helps. ”
“I love the symptom chart because it breaks everything down
and makes it so simple to see what everything is. ”
“Very interesting stuff you don ‘t realize what something like
this could do. ”
“It ‘s CPAP like an air splint, pretty simple process the
symptoms, many of them were me all the way. ”
I wanted to know about REM sleep, ECG and EOG, what is that
and what does it mean my oxygen level is low? “”I had most of the symptoms on the list before I was diagnosed.
Now I understand how to rate my severity.
”
“I spent the most time here this section because that was kind
of informative to me, I didn ‘t know about the stroke risk.”
“The symptoms are right on. ”
“I didn ‘t know what CPAP actually stood for. ”
Trouble-shooting problems “Would like information about how to put it on because trying
to do it myself you watch the guy once and then that ‘s it good
luck. ”
“I did feel claustrophobic; like someone was trying to smother
me. it was hard to get used to.”
“It was good listing all the problems and the solutions are right
next to each other awesome to have them side by side.”
“I did have trouble getting use to my mask I thought these were
neat steps to try to get used to it. ” “Helpful to use with your new CPAP as you went along.”
“It doesn ‘t apply right now but that doesn ‘t mean I shouldn ‘tbe
aware of it. ”
Tools
to check progress “Family feedback is perfect.”
“I did like this the charts to keep track of your progress, I want
these so bad they are great to keep track of yourself. “”The tools helped especially looking at my sleep habits. People
don
‘t really look at their habit until they are not getting enough
sleep. ”
“Being aware of how I felt was important. ”
“Family feedback good because you may just not be aware
personally. ”
Making it part of your
routine “It shows you how you can integrate everything together and
make it easier to adjust.
”
“Good tips to know how to adjust because it ‘s hard to adjust to
something like that. I said the exact same things.”
“Not sure what to make of that page to be honest with you ”
(checking your response). “This was my experience
ethe energy, the sleep trouble, safety
concerns social issues epretty spot on. ”
Ask your provider “Good for your?rst appointment with the doctor. ”
“I like this because at ?rst I had no idea where to go from there.
And to have these questions, just somewhere to start would
have been so much less frustrating. “”Might help you to be an advocate for your own health.”
“These are some decent questions. ”
CPAP user stories “The stories are pretty long; my attention span is about one
page.”
“Those were very good examples I felt more at ease once I read
then. I am glad I, not the only one that feels like this way. The
illustrations were excellent. ”
“The best part of the book, it lets you know you are not the only
person in the world with this crazy illness or whatever, people
who struggling with the same things that you are or similar
things, they do get better and the CPAP makes them better. ”
“You are not the only one struggling with this, it makes you feel
better.”
“I read them and thought they were kind of neat, they are all
good to read and they are all different. ”
“It made good reading. I wish I had this before going to my sleep
study just to know a little bit more what I was looking at. “”The stories were great because to hear other people
‘s stories
and how they adjusted is good ethat they get through it. ”
” Good anecdotes for getting used to dealing with CPAP. ”
“I
read them and some of them hit me, they could be me there. ”
“They are stories about life. ”
“They are some of the things that I ‘ve gone through already so
far in the ?rst 3 e4 weeks.”
General comments “Useful for when you are just learning that you have sleep
apnea, that is the 300 pound gorilla in the room. ”
“The labels for the sections were confusing. ”
“Put all of the links at the end. ”
“This would be good when I ?rst had the machine. ”
“I liked it a lot actually overall. I liked the idea of it a lot
particularly when you ‘re ?rst getting to know it getting the idea
of sleep apnea to get a grasp on it. To have something quickly
available for them to understand a little bit better what ‘s going
on. ”
“They need this before they get the machine to help them
prepare for it. Because when I ?rst got it I was very petri ?ed eI
didn ‘t know if I could do this sleep all night with this thing on
my face. ”
“Would like to have this before I got my feedback. It would have
been a lot easier to grasp what you ‘re about to do or what you
might need to do than just have a bunch of doctors tell you. It ‘sa
lot easier to have it in front of you. ” “Would be helpful to get this at book at your second sleep study
before you saw the doctor that way you could really question
him once you get your results.
”
“You get your results and you don ‘t know anything but reading
this book it really does help. ”
“Pretty informative overall regarding sleep apnea, the effects, of
having it, the treatment and how it improves your health, pretty
solid information. ”
“Answers the questions I had when I ?rst got my CPAP
(6 months ago).”
S.S. Dickerson et al. / Heart & Lung 42 (2013) 346 e352
350
Interview techniqueTo elicit their feedback on the intervention, the participants
were asked a set of open ended questions, asking them to, “Think
out loud while viewing each page of the book, asking what
thoughts come to mind while reading; and what should be added
or suggestions for improvement. “Field notes were taken by the
interviewer to add comments on content and design suggestions.
To understand the context of their responses, general de-
mographics about the participants were collected including: age,
gender, marital status, BMI, education, sleep problems, smoking
history, OSA severity, and self-reported compliance.
Analysis
Thematic analyses of qualitative interviews were organized
from the perspective of each component of the intervention, similar
to the technique of Kan ?et al
28Interviews were audiotaped and
transcribed. The interview text, researcher ?eld notes, and de-
mographic data for context of OSA symptoms and CPAP use, were
the data for analysis. Two authors systematically analyzed and
compared results, going back to the original interview text to verify
discrepancies and gain consensus and to determine whether to
retain, modify or delete content. Participants ‘interpretation and
suggestions for improvement are summarized in Table 5organized
by content. Participants proposed useful suggestions for imple-
mentation process in practice. We focused our analysis on whether
it was easy to use, did it make sense and did they learn from the
content.
Results
The ten participants had a mean age of 42.7 (SD ¼13.7), with 4
males and 6 females of which 30% were African American and 70%
white. Forty percent had a high school education or less, and 30%
had some college and 30% achieved a college degree. Forty percent
had moderate disease and 60% were severe as identi ?ed by their
self-report of AHI or severity level. Four were just beginning the
treatment, 5 had been using CPAP from 1 to 6 months and 1 for
3 years. Half self-reported as compliant for 4 h per night. Complete
demographic characteristics are provided in Table 4.
Feedback on the intervention The participants gave an overall impression of the intervention.
One participant only gave a brief interview due to dealing with a
new diagnosis of cancer which was a priority over sleep apnea
problems, which provides insight into problems with con ?icting
comorbidities. General themes included: need for awareness of
potential implications of untreated OSA; understanding diagnosis
assists in communicating with providers and vendors; help in
problem solving CPAP mask issues; monitoring progress assisted in
noticing symptom improvement; and patient stories helping
realize you are not alone. The participants’ feedback quotes are
further explicated in Table 5.
Content retained The majority of the content was retained without modi ?cation.
Participants from all education levels were able to comprehend the
content at the 5th grade reading level.
Content revised Revisions related to changing order of content such as putting
the symptoms of sleep apnea before the good news about CPAP
treatment, making pictures larger, limiting the length of the patient
stories, and altering the words “supine “and “prone “to improve
readability. Content added
Additional information was requested to clarify understanding
of the sleep study, sleep stages and oxygen saturation levels. Con-
tent on adjusting the ?t of the mask was suggested to supplement
demonstrations by the vendor. A web link was added to the second
version that provided a video presentation on ?tting a basic mask.
Two participants recommended adding suggestions to keep a sleep
journal/diary to assist self-evaluation.
Feedback on organization and process Several participants suggested that it would be bene ?cial to give
the intervention book to patients when initially diagnosed with
OSA before starting on CPAP. One of the CPAP naive participants
indicated that the intervention helped him know what to ask of his
provider. Another participant suggested that the intervention was a
valuable, handy resource especially for people who do not have
computers or internet such as the elderly.
Suggestions for other patients Participants suggested for others to get the CPAP machine as
soon as possible, read about CPAP before getting it to be more
prepared and to ?nd resources to help with CPAP adjustments. One
stated, ”
It is not scary as it seems .once
you start using the ma-
chine you feel better. “Another reiterated comments from the
intervention, such as, put the mask on before even going to bed at
the beginning to get used to it and to focus thinking on the positive
outcomes which would make it easier to accept the mask. One
participant indicated that the intervention could be more bene ?cial
for patients who do not have a dramatic improvement after using
the CPAP, using the tools in the intervention can help this group of
patients realize a subtle progress that they may not spontaneously
recognize.
Discussion and conclusion
The purpose of this study was to describe the development of an
intervention and determine the usability of the self-management
intervention in book format in order to provide a cost effective tool
to support self-management for individuals with newly diagnosed
obstructive sleep apnea who are prescribed CPAP treatment. Study
participants provided valuable feedback on content retention,
suggestions for revising content, provided additional content and
suggestions for other patients. Utilizing the framework for designing and evaluating the com-
plex intervention to improve health was effective in guiding the
initial development of the self-management intervention. This
intervention was multidimensional in order to address inter-
related factors that in ?uence CPAP adherence similar to Hoy ‘s
research testing a complex comprehensive intervention
31; how-
ever, Hoy ‘s research required intensive resources for support and
supervision during the treatment. The self-management interven-
tion in this paper was envisioned to be used by the patients inde-
pendently and only future testing will determine the feasibility of
this approach. Initial usability testing of the self-management intervention
guided modi ?cations to improve understanding of content and
usefulness of tools from the perspective of CPAP users. In spite of
the limitation of the small number of participants, the usability
study indicated that the intervention was understandable and
acceptable for these individuals. The next step is implementing a
feasibility study by testing in newly diagnosed OSA patients pre-
scribed CPAP treatment. An approach of adding qualitative inter-
viewing would also assist in understanding which component of
the intervention is most helpful for various patients in making CPAP
use part of their routine.
S.S. Dickerson et al. / Heart & Lung 42 (2013) 346 e352 351
SummaryThis manuscript describes the initial development of a self-
management intervention to support CPAP adherence in in-
dividuals newly diagnosed with OSA, which was guided by the
initial steps of Campbell ‘s Framework for Design and Evaluation of
Complex interventions. The subsequent intervention in book
format was tested for usability in a group of OSA patients who were
prescribed CPAP. Minor modi ?cations were made to the interven-
tion in preparation for a future study to test the feasibility in a
group of newly diagnosed patients with OSA.
Acknowledgments
This study funded by the Patricia Garman fund, University at
Buffalo, School of Nursing. Thanks go out to the content reviewers: Sara Matheson-Rugsby,
a PsyD, CBSM, a licensed clinical psychologist specializing in
behavioral sleep medicine University of Rochester. The primary
author shadowed her practice to observe cognitive behavioral
treatment weekly for 2 months. Dr. Alan Aquilina, MD, Professor of
Sleep Medicine, University at Buffalo. Dr. Eric Ten Brock, MD, Pul-
monology, Sleep medicine, Internal Medicine, University at Buffalo.
Patricia Smith, NP RN, specializes in sleep medicine and cognitive
behavioral therapy for insomnia. Dr. Carla Jungquist, Dr. Grace
Dean, and Dr. Rana Obeidat from Sleep research team at University
at Buffalo, School of Nursing.
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