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[Qualitative Research in Medicine & Healthcare 2017; 1:6219] [page 81]
Introduction
Seizures are fear-inducing experiences for those hav-
ing them and for their friends and family members.1-3
Seizures comprise an estimated 1%-2% of all Emergency
Department (ED) visits per year.4 Despite that fact that
patient-centered outcomes and shared decision-making
models are widely promoted in healthcare today, no re-
search has attempted to understand the ED experience
from the point of view of first-time seizure patients and
their families, including their experiences of the setting
and pace of the typical components of a first-time seizure
evaluation, diagnosis and treatment.
The current ED practice standard for uncomplicated
first time generalized seizures in adults evaluates patients
for toxic, metabolic, structural, cardiogenic and systemic
causes.5 If no abnormalities are identified, patients are in-
structed to refrain from at-risk activity (e.g. driving, swim-
ming) and told to arrange follow-up with a neurologist.
Since the standard neurologic evaluation for first-time
seizures includes performance of an electroencephalogram
(EEG) as an outpatient, patients must undergo an EEG after
ED discharge.5,6 Research has demonstrated the importance
of performing early EEGs among first-time seizure patients
for timely identification of epilepsy, as rapid diagnosis and
immediate initiation of antiepileptic drug (AED) therapy
after an epileptic seizure significantly reduces seizure risk
in the short term by about 35%.5,7 However, the barriers to
appropriate outpatient follow-up and the important patient
and family centered outcomes related to first time seizures
in adults are poorly understood.
In this paper, we utilize the concept of patient-centered
outcomes to consider the patients’ and families’ experi-
ences when deriving treatment options for first-time
seizure patients.
EEGs in the Emergency Department
There has been virtually no research on Emergency
Patient-centered outcomes: a qualitative exploration of patient experience
with electroencephalograms in the Emergency Department
Christine S. Davis,1 Sandra K. Beverly,2 Jackeline Hernandez-Nino,2 Andrew J. Wyman,2 Andrew W. Asimos2
1University of North Carolina at Charlotte, Department of Communications; 2Carolinas Healthcare System, Department of Emergency
Medicine, Charlotte NC, USA
ABSTRACT
The primary objective of this qualitative project was to understand the experience of patients who had first-time seizures and who
did, and did not, have electroencephalograms (EEGs) performed in the Emergency Department (ED) as part of their initial evaluation,
so as to refine the diagnostic and therapeutic approach to these patients and transform the standard of care for first-time seizures by fo-
cusing on outcomes as defined by patient experiences and expectations. In this paper, we show that, regardless of the diagnostic and
therapeutic approach patients are given in the ED, patients and caregivers trust that health care providers will perform the standard of
care consistent with the current medical practice for first-time seizures. However, performing EEGs in the ED and initiating appropriate
anticonvulsant therapy for those patients who are at high risk for future seizures addresses patient needs by offering patients a sense of
security and control over their medical condition and expediting appropriate follow up care, as long as clearly stated written diagnostic,
treatment, and referral instructions are provided upon discharge.
Correspondence: Christine S. Davis, University of North Carolina
at Charlotte, Department of Communications, 9201 University City
Blvd, Charlotte, NC 28223, USA.
E-mail: Csdavis2@uncc.edu
Key words: First-time seizure, healthcare, electroencephalograms.
Contributions: all authors contributed equally.
Conflict of interest: the authors declare no potential conflict of in-
terest.
Funding: this work was supported by an Emergency Medicine
Foundation 2014-2015 Resident Research Grant and a Carolinas
Healthcare System Internal Grant.
Conference presentation: this study was presented at the ACEP an-
nual meeting in October of 2015 in Boston, Massachusetts.
Received for publication: 4 August 2016.
Revision received: 10 January 2018.
Accepted for publication: 10 January 2018.
This work is licensed under a Creative Commons Attribution Non-
Commercial 4.0 License (CC BY-NC 4.0).
©Copyright C.S. Davis et al., 2017
Licensee PAGEPress, Italy
Qualitative Research in Medicine & Healthcare 2017; 1:81-92
doi:10.4081/qrmh.2017.6219
Qualitative Research in Medicine & Healthcare 2017; volume 1:81-92
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Department (ED) experiences or post-ED experiences
among patients with seizures, and little research examin-
ing the effects of EEG performance in the ED after a first-
time seizure. EEGs are a valuable tool to evaluate the
functional status of the brain. Researchers have deter-
mined that first time seizures are related to an epilepsy di-
agnosis in 15%-47% of cases based on EEG testing.8,9 As
a case-in-point, researchers conducting a recent study of
ED EEG performance found an epilepsy rate of 21% in
adult first-time seizure patients who were candidates for
discharge from the ED.10 In this study, all of these patients
were started on AED therapy immediately upon discharge
and followed up by a neurologist in two weeks. Con-
versely, first time seizure patients who are discharged
from the ED without undergoing an EEG (and who ulti-
mately have undiagnosed epilepsy) are at risk for recur-
rent seizures. In addition, the resulting delay in following
up with a neurologist and in beginning anticonvulsant
therapy is also medically problematic. For some patients,
an inability to follow-up with a specialist after being dis-
charged from the ED results in substantially delaying or
entirely neglecting appropriate follow-up care.10
EEG use in the ED is often limited by the availability
of trained staff, time limitations, and financial constraints.
Yet, physicians are better able to diagnose and treat patients
when they have the EEG results in hand. For example, re-
searchers examining the use of EEGs in the management
of patients who present with altered mental status reported
that an EEG helped to establish the diagnosis in 56% of the
cases, changed diagnostic management in 49% of cases,
and changed treatment plans in 42% of the cases.11 Simi-
larly, Praline, Grujic, Corcia, and colleagues12 note that
EEGs ordered on an emergent basis in the ED as well as in
the hospital contributed to the diagnosis in 78% of cases
examined. Sadleir and Ingrid13 report in a study performed
on children presenting with first-time seizures that the rate
of epileptiform discharge (uncontrolled electrical dis-
charges in the brain associated with epilepsy, identified
through EEGs) was 57% in patients on an EEG performed
within 24 hours of the seizure, and another study of EEGs
performed in adults and children within 24 hours of a first-
time seizure found a rate of epileptiform discharge of 47%.9
Importantly, this study demonstrates that early EEG per-
formance had a higher rate of finding epilepsy (51%) com-
pared to 34% when EEGs are performed later. The use of
EEGs in the ED for seizure patient management is a feasi-
ble option if utilized properly.14,15 EEGs administered in the
ED, and remotely interpreted by an on-call epileptologist,
have been found to allow providers to initiate appropriate
therapeutic treatment earlier as well as arrange for close
outpatient follow up.10
Patient-centered outcomes research
In the patient-centered outcomes and shared decision-
making model widely promoted in healthcare today and
mandated by the 2010 Affordable Care Act, patients and
families actively participate in their own treatment decision
making and planning. Patient-centered care is a model of
shared power between the patient and the medical
provider16 defined as care that is respectful and responsive
to individual patient preferences, needs, and values and
customizes treatment recommendations on the basis of in-
formed, shared decision-making […] development of pa-
tient knowledge, enhancement of skills needed for
self-management of illness, and preventive behaviors.16
Researchers studying patient-centered care have con-
cluded that including patients and families as partners in
the decision process enhances clinical outcomes and treat-
ment compliance, leads to more cost-effective healthcare,
and is a more ethical choice.17-21 However, balancing evi-
dence-based medicine with patient choice is a challenge.17
Two keys to implementation of this model are effective pa-
tient-provider communication and information manage-
ment.16,17,22 Essential to this model is the inclusion of patient
and family experiences, needs, and perspectives, including
sources of distress, social issues, and behavioral issues;16
with therapeutic information and knowledge, and by align-
ing medical decisions with health outcomes that are rele-
vant to patients and families.18,20,22 The concept of
patient-centered outcomes is one of shared voice-patients
and families being heard, respected, understood, and con-
sidered by healthcare providers.18,20,22 A focus on patient-
centered outcomes does not preclude clinical or therapeutic
considerations, but this focus by definition also incorpo-
rates consideration of quality of life, access to care, and pa-
tient preferences.18,22,23 So important is this concept of
patient-centered outcomes that the Patient-Centered Out-
comes Research Institute (PCORI) – created in 2010 by the
ACA – supports extensive research in this area.19,20
Study objectives
The primary objective of this qualitative project is to
understand the experience of patients who had first-time
seizures and who did, and did not, have EEGs performed
in the ED as part of their initial evaluation, so that the ap-
proach to their care could be refined. This study is part of
a larger project focusing on both quantitative and qualita-
tive outcomes defined by patient experiences and expec-
tations. In all of this related research, the overarching goal
is to transform the standard of care for first-time seizure
patients to improve the experience for both patients and
providers.
In this portion of the research, we sought to specifi-
cally address the following Research Questions:
RQ1: What was the experience like (both in the ED
and after) for patients and families following a
first-time seizure experience?
RQ2: What are the important patient outcomes fol-
lowing a first-time seizure experience?
RQ3: What are patients’ and families’ expected stan-
dards of care for treatment of first-time seizures
in the ED?
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RQ3: How might patients and families’ experiences
of first-time seizures be shaped by performance
of EEGs in the ED?
Materials and Methods
Focus groups are a qualitative research tool that capi-
talizes on group processes and interpersonal interactions
to gain rich experiential data about a topic of interest.24-27
Focus groups bridge the emic-naturalistic data and the
etic-researcher imposed data, and are especially useful for
understanding the patient experience and determining pa-
tient centered outcomes as they are discussed in a group
setting.27 We conducted four homogeneous focus groups
among i) patients with seizures who had an EEG per-
formed in the ED; ii) patients with seizures who did not
have an EEG performed in the ED; iii) family members
of adult patients recently diagnosed with seizures; iv)
seizure patient advocates. The focus groups each had be-
tween three and nine participants, for a total of 22 focus
group participants. We attempted to hold one additional
group with patients with seizures without health insurance
coverage but only one participant attended that session,
so we conducted a personal in-depth interview with her
instead.
We did have a significant no show rate for some of the
focus groups, so, following the focus groups, we con-
ducted seven telephone interviews to increase diversity in
the sample and to further inform study findings about ex-
periences of patients with no health insurance and non-
English speaking Hispanic first-time seizure patients.
In all the focus groups and interviews, we gathered in-
formation about: i) perceptions of the ED experience; ii)
perceptions of the experience obtaining, or not obtaining,
an EEG in the ED; iii) perceptions of treatment during and
after the ED; iv) their experience of the follow-up care;
v) perceptions of the experiences after treatment; vi) de-
sired outcomes for treatment (during and after); vii) per-
ceptions of factors that facilitated or hindered follow-up
care; and viii) perceptions about the care in general.
The groups and interviews were facilitated by the first
author who is a university researcher, the second author
who was an emergency medicine resident, and the third
author who is an Emergency Medicine Researcher and is
proficient in Spanish. We audio and video recorded the
focus group sessions and audio recorded the interviews.
Each session lasted approximately 90 minutes.
Recruiting and sampling
Using purposive and convenience sampling, we re-
cruited participants from the medical center’s ED and
local neurology and epilepsy clinics. Participants were
current or former patients of referring physicians, were
family members of current or former patients, were par-
ticipants in a prior first-time seizure research project who
indicated agreement to participate in future research, or
were seizure patient advocates recruited from a local
epilepsy center.
Specifically, the focus group and interview partici-
pants (and their family members) who had an EEG per-
formed in the ED were recruited from an ongoing
quantitative research project studying EEG performance
in first-time seizure patients.10 The focus group and inter-
view participants (and their family members) who did not
have ED EEGs performed were recruited from a regional
healthcare system’s neurology and epilepsy clinics. We
recruited seizure patient advocates from local and regional
epilepsy support groups.
The focus group and interview participants who had
an EEG performed in the ED and who were recruited
from the ongoing quantitative research project studying
EEG performance in first-time seizure patients had a fol-
low up appointment made for them before they were dis-
charged from the emergency department and – as a result
of being enrolled in the ongoing quantitative study – were
guaranteed the opportunity to follow up with a neurologist
within two weeks of their ED visit irrespective of insur-
ance status. We do note that this may have influenced their
perceptions about the impact of an ED EEG in facilitating
follow-up.
There were five individuals who participated in the
focus group for patients had who had an EEG in the ED.
All five of these individuals were insured. Four of these
individuals were diagnosed with epilepsy based upon the
EEG that they received in the ED. All of these individuals
were started an antiepileptic medication. The remaining
individual had an abnormal EEG but was not diagnosed
with epilepsy and this person was not started on medica-
tion. The five interview participants who had an EEG in
the ED were not insured, as we purposely sought out non-
insured patients for these interviews to gain an additional
perspective we felt was missing from the focus groups
alone. One of those five was a non-English speaking
woman of Hispanic ethnicity who was purposively in-
cluded for her ethnic perspective. All of these participants
had normal EEGs and were not started on antiepileptic
medications.
There were three participants in the focus group for
those patients who did not have an EEG in the ED. In ad-
dition, one of the telephone interviews was with a patient
who did not have an EEG in the ED.
Three family members and two patients participated
in the focus group for family members. Family members
included a father, a sister and a significant other. One of
the two patients in this group did not have an EEG in the
ED and the other did have an EEG in the ED which was
read as epileptic, but the patient was not started on an
antiepileptic medication. In addition, the phone interviews
included one family member of a person who did not have
an EEG in the ED and did not have health insurance.
There were a total of nine participants in the focus
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group for advocacy members, which included the director
of the local epilepsy foundation, family members of pa-
tients with epilepsy, and patients who were diagnosed
with epilepsy. As we stated, we conducted an interview
with the one patient who attended the focus group for the
patients who did not have insurance.
All study participants were age 18 and older and were
able to consent. We gave participants 15 US dollars ($)
gift cards for their participation and provided them with
a meal during the focus group sessions. Our study was ap-
proved by the Institutional Research Boards of Carolinas
Healthcare System and the University of North Carolina
at Charlotte, and we reviewed informed consent with par-
ticipants when they were invited, individually when they
arrived for the focus group session, and again as part of
the introductory comments in the session.
Coding and analysis
Utilizing Charmaz’s28 emergent approach to research,
analysis and questioning began early in the process and
continued throughout all stages of research. We debriefed
possible findings after each focus group session and re-
vised the facilitation guide as the group sessions pro-
gressed. We added the seven telephone interviews to
address questions and gaps that emerged as we moved
through the data collection and analysis stages. Of course,
focus groups themselves are a non-hierarchical method in
which participant voice is more equalized than in posi-
tivist or social science based methods, and in which par-
ticipant construction of meaning is key,26 so the groups
themselves represented a partnership between study par-
ticipants and researchers to make meaning of the experi-
ence. We transcribed all audio and videotapes
word-for-word indicating conversational turns and
speaker changes. We coded and analyzed data by means
of Charmaz’s28 constructivist approach to grounded theory
coding, utilizing a systematic, multi-step coding process
starting with line-by-line coding and employing the con-
stant comparison method to derive categories and themes.
This is an inductive approach to data analysis, which starts
with a broad research question and narrows down to un-
derstanding a phenomenon based on the data itself.
We established a qualitative approach to validity and
reliability with the use of multiple coders and a systematic
process in which all five members of the research team
each coded the transcripts individually, first making mul-
tiple passes through the transcripts to immerse ourselves
in the data, jotting down analytical notations, including
initial thoughts and ideas. We then each individually
moved from this stage to development of a list of potential
themes and ideas. The research team then met and com-
pared and debriefed their initial analytical ideas. As a
group, we created an initial list of metacodes and thematic
categories which represented the focus group and inter-
view findings. The first two authors then made additional
multiple passes through the data to further refine the cat-
egories and connect the transcript text to each code
through the constant comparison process by looking for
similarities and differences in the data and the emerging
categories. We compared each emerging category with
each other category and combined, divided, and sorted the
data into final themes until all of our data fit into cate-
gories.29 The results reported here represent the final cat-
egories and are illustrated with representative quotes from
the transcripts.
Results
Seizures are experienced as traumatic emergencies
and, coupled with the memory loss and confusion first-
time seizure patients experience surrounding the ED visit
due to their medical state at that time, for the majority of
patients, this experience is fear inducing, unknown, un-
expected, and stigmatizing. In addition, for some patients,
the first-time seizure experience has negative financial
ramifications, adding to the trauma of the experience. The
medical testing, treatment, and discharge experience in
the ED is confusing to patients. They don’t understand or
clearly remember what they are told in the ED. In addi-
tion, referral information is inadequately provided and too
long a wait for follow-up care, resulting in an anxiety-pro-
voking experience. Regardless of the diagnostic measures
offered to patients in the ED, for the most part, patients
trust medical professionals to act in their best interest dur-
ing this time; however, patient experiences suggest that
earlier diagnostic testing and provision of medication and
specialist referrals would ease patient distress, as long as
clearly stated written diagnostic, treatment, and referral
instructions are provided upon discharge. Detailed discus-
sion of the categorical findings follows.
Seizures are experienced as traumatic emergencies
Experience is traumatic, fear inducing and stigmatizing
The seizure experience is completely unexpected and
sudden, occurring sometimes at night, sometimes in public
or when around others, often in dangerous, terrifying, em-
barrassing, or stigmatizing situations. The seizure itself
does not last long, although the overall experience might
feel interminable. Participants describe a chaotic, out of
control experience, compounded by physical incidents such
as a bit tongue, loss of bladder control, agitation, dizziness,
confusion, loss of consciousness, memory loss, vision loss,
shaking, and incoherence. Participants emphasize under-
going emotions surrounding the seizure experience of feel-
ing different, uneasy, and out of control. Memory loss
coupled with mental confusion and lack of comprehension
makes the experience all the more terrifying. Additionally,
the seizure experience interrupts one’s daily routine in
many ways, both during and after the experience itself, fur-
ther adding to the feelings of being out of control. For most
first-time seizure patients, EMTs are the first line of medical
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care. EMTs transport patients to the ED, administer oxygen,
check vital signs, and check for injuries, so the EMT re-
sponse adds to the initial experience.
I had come in with my friend that I was at her house,
and we were getting ready to go to bed. It was around
11 o’clock and she said she turned around to turn off
the lights, turned back around and I was in a seizure.
Mine happened as I was driving but luckily I
sensed that I was not feeling right, so I got to the CVS
pharmacy to get something to eat and some water and
walked in there, walked back to the cooler got a water,
walked up to the counter and I was feeling light
headed. My vision was really kind of blurry, and I
could not focus and see. I remember it took me a
minute to focus. I tried to find a candy bar, because I
do have low blood sugar, so I thought that might be
the reason, what the light headedness was. I could not
focus, and the last thing I remember is punching my
PIN code and that was it. Then I woke up in the emer-
gency room.
I work uptown and at 5 o’clock I was coming home
on Stonewall St. right up the hill and I was talking to
my daughter and she said, ‘Mom, something is wrong
with you’, and I was aware that I could not find the
words to express, but I was kind of making a joke out
of it, like ‘What are you talking about, don’t make fun
of me’, but I knew honestly something was really
wrong and that is the last thing I remember. I totaled
my car. I hit a couple of light posts and another car.
I was at the mall and I had my two-year-old with
me and we were at Gymboree and I just remember this
overwhelming sense that I am not okay, I need to tell
somebody, and I could not speak, and then I woke up
and I was on the floor, and hit my head and my shoulder
was hurting. This sweetest teenage manager in that
store was just looking at me and saying, I just remember
looking up and she just said, ‘It’s okay, you had a
seizure, help is on the way,’ and I remember being con-
cerned about my son and there were all these moms
playing with him and he was fine. I had programmed
ICE into my phone, and so they had already called my
husband and he was on his way, so they said, ‘Your hus-
band is on his way, the ambulance it’s on the way,’ and
then I don’t remember a couple of hours.
I just remember looking across the store and then
I remember being at the front of the store…I wanted
to know what happened…I wanted to know who called
you? How did I…how did I end up here?
I guess I took down some displays. And I was kind
of fighting back. They put an IV in me and I knocked
it out. I was just kind of going nuts. From talking to
the EMS or the fire fighters they said that they really
had to pump a lot of anti-seizure stuff to get me to calm
down because I was just kind of going nuts. My face
was kind of bruised up and I had a black eye for a cou-
ple days, looked like I was in a fight.
Experience is unknown and uncertain
While some participants have a family history of
seizures and thus have some idea – at least after the fact
– of what is happening, others have no prior knowledge
of seizures. Some family members recognize the experi-
ence as seizures at the time of onset, but some do not
know what is going on at the time of seizure. Regardless
of prior knowledge, participants are quite unprepared for
the experience.
My child had petit mal seizures so I knew grand
mal could come, [but] I was not prepared for it when
it happened.
I did not feel anything. I never felt anything when
I had the seizure, but I have seen other people having
a seizure and everything they went through. When I
had the seizure, my husband was desperate.
As previously stated, the experience is extremely
frightening. A large part of the fear is based on not
knowing what is happening. Parents of children with
seizures report being fearful that their child is dying,
and the loss of control of oneself or one’s child is es-
pecially terrifying.
When we [went into] into the emergency room it’s
scary, [my son is] two years old, you don’t know
what’s going on, that was very scary…and at that
point he came out of it…it’s very traumatic.
That is trauma…you think they died.
You hear people talk about this, it is one of the
most frightening moments of their life.
My nine month old, I took her out of the car and
her eyes rolled back…I went inside; I am freaking out,
what do you think is wrong with her that her head
started shaking, I started screaming, someone called
911, and they came.
Experience results in confusion and memory loss
Even more unsettling to the participants than not being
able to remember what happened during the seizure itself
is not being able to recall the information that is given
during the ED stay. During the ED visit, participants un-
dergo several tests in an attempt to decipher why they had
the seizure. Prior to discharge, the patients are informed
of their results, with or without someone else present. Pa-
tients are in no state of mind to understand this informa-
tion at that time. For some, it is because of the
overwhelming fear that they experience; for others, they
are not able to understand simply because of the confused
state of mind that lasts for hours to days after the seizure.
Often, participants are not able to recall information about
how they arrived at the ED, what happened in the ED, or
even what the results of the ED tests showed. Further, pa-
tients are also unable to remember crucial details about
follow up appointments or directions for prescription
medications.
After I got back to work, I forgot my results, so I
had to see the doctor…I made an appointment. He
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made me come and see him like in 10 days afterwards,
and then I thought that it was the first I was meeting
him. He said, ‘No, because we talked in the emergency
room.’ I said, ‘I don’t remember’, because I was taking
my pills wrong. I was taking them backwards and he
said, ‘I told you this in the emergency room’ and I said,
‘Sorry’.
Patients need reassurance in the ED
Once in the ED, patients undergo numerous diagnostic
tests in an attempt to decipher why they experienced a
seizure, including CT-scans or brain scans, EEGs, MRIs,
blood tests, and measurement of vital signs including
blood pressure and temperature. Most participants have
vague memories of medical testing, but many cannot re-
cite which tests were completed.
Well I was certain there was [testing in the ED];
when I had the MRI I thought there was a brain tumor
that is why, because they were all kinds of things going
on, but it wasn’t. I did all the follow up stuff, a whole
battery of cardiac stuff just to rule that out, so I got
every test done known.
They checked my blood…they were asking ques-
tions trying to induce, the strobe light thing you have
to try to see if they could make one happen, and they
are measuring your blood pressure and checking your
pulse, you know the normal doctor stuff.
Most participants know that some testing was done in
the ED but are not sure of what specific tests were com-
pleted.
They just did a, I guess it was an MRI, I don’t know
if they do an MRI or CT-Scan – what’s the difference
– just…to make sure no tumors were there.
The time course of the emergency department visit
typically lasts several hours. The longer length of stay is
commonly a result of physicians allowing the patients to
awaken from their postictal state (the period of time after
a seizure in which the patient is in an altered state of con-
sciousness and confusion) following the seizure, as well
as for allotting time to complete the required testing in the
ED. Whether or not they have an EEG in the ED, partic-
ipants are typically discharged from the ED that same day.
This is the current standard disposition for an uncompli-
cated first time generalized seizure patient. Patients who
have abnormalities identified on imaging or laboratory
studies while in the ED sometimes require an overnight
admission for further evaluation and management of the
underlying issue. This includes additional laboratory test-
ing or, for some patients, further brain imaging. Occasion-
ally, a patient requires a second EEG to further elucidate
what is happening with him/her. If admitted, the patient
is typically seen in consultation by a neurologist.
Because seizures are not an infrequent experience to
ED staff, and are not life-threatening conditions from a
medical standpoint; but are terrifying and confusing to
seizure patients and their families, there is a disconnect
between the level of care and concern patients and family
members need from the ED and the level of concern pro-
vided. Given that the patients are in the ED for many
hours, there is a need for increased reassurance and infor-
mation management.
I think I felt like there were lots of people in there.
I never felt ignored, I never felt that people forgot
about us, but I needed someone to say, I felt like [they
acted as if] it was an everyday occurrence, and this
was not an everyday occurrence in my life, and so I
needed someone who would come in and say, we un-
derstand this is not an everyday occurrence so here is
what we are going to do, you are going to follow up
with your neurologist and your neurologist is going to
give you, they are going to work with you on what
other tests you need, and what medication you are
going to need, and these are the steps, instead of just
saying follow with your neurologist, just pitch it back
in somebody else’s hands.
Some patients report being placed in a hallway bed for
several hours without anyone offering to help them change
out of their soiled clothing. Some have traumatic injuries
from the seizure and remember that no one helped to clean
them up for a very long period of time. For some, the ex-
perience is so anxiety provoking, they require medication
to calm down. In addition, some describe their experience
as being treated nonchalantly by ED staff, in contrast to the
perception of it being an extremely traumatic event for the
seizure victims and their family members.
One of the things that I’ve heard from lots and lots
of people over the years…it is one of the most fright-
ening moments of their life, yet the emergency room
staff see one of these every hour.
I went and had all the…they rush you down for the
CT scan. You wake up and you have these little things
on you [researcher note: electrodes]. You don’t know
why you have these things on you, who is doing what,
but it is like, what do I do with this.
I am all bloody. Can somebody clean me up?
Experience is overwhelming and anxiety-producing
well after the seizure is over
Participants experience a wide array of emotions after
their discharge from the ED. Many recall being over-
whelmed for several days after their first-time seizure and
ED visit. After their seizure experience, patients take several
days off of work and sleep for several hours a day to recover.
The commonly reported emotion after the seizure experi-
ence is fear. Regardless of what happens in the ED, partici-
pants report lingering fear due to not fully understanding
what having a seizure disorder means. Participants are afraid
of the unknown and worried that they will have another
seizure. Some participants are afraid to fall asleep afterwards
because they are afraid that they will not wake up.
This was new for me. I never expected this of me
and I was very depressed for a long time, very long
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time. I was crying all the time. I spent my time thinking
and crying and wondering what was going to become
of me. Why do I have to be medicated? But, thanks to a
lot of people that I live with and especially my husband,
his support and my friends’ support, I started to under-
stand the situation. I am not the only one that is going
through this and there are worse things that people have
to go through, worse than mine. And, little by little, I
started understanding that my illness is not that bad.
That, if I take care of myself, I am going to be okay.
Patients’ baseline anxiety exists for a long time after
the experience. Patients are fearful of experiencing more
seizure activity and have thoughts about when and where
another episode could occur. Some suffer from anxiety
about bad outcomes if another seizure occurs. For many,
a major restructuring of their confidence, self-esteem, and
independence results from the seizure experience.
And you never know when it’s going to happen
again, and she is supposed to go on the eighth-grade
swimming trip and I am saying, ‘No you can’t get in
the ocean’. There is no way you know, and you do all
this controlling stuff and you try to keep them from
doing things and they wind up doing it anyway.
Before I felt confident, strong. Now I depend on the
medicine to be well. If I do not take the medicine, I
will have seizures again. And I am scared. That scares
me because I have always been a very independent
person all my life since I was very little, and I have to
depend on people. I cannot be like that. That has also
affected my personality because before I was always
looking ahead. Now I just stay there, I don’t do what I
used to.
I was saying to that doctor, something is wrong with
me. My husband was saying something was wrong with
me. Everyone who works with me says, she just has this
blank stare all the time, so I was relieved by knowing
[that it was seizures], but it was like, what’s going to
happen next and how long could I go without.
To add to the levels of anxiety, their fears are not en-
tirely unwarranted. Some patients do have recurring
seizures.
She did have another seizure. They have said 50%
chance she would have another one and she had one
a week later in the shower.
Patients want their lives to go back to normal as soon
as possible after the seizure, and in an effort to reach nor-
malcy, some try to stop thinking about the unknown and
make efforts to manage the anxiety surrounding their di-
agnosis. Yet, most patients have to make significant
changes to adapt to their seizure disorder, and participants
note there are some unavoidable changes. All patients face
undesirable lifestyle changes. For instance, participants
are required to stop driving for at least six months follow-
ing their seizure.
I lost my license promptly so that’s that, but I said
to my doctor, I cannot even think about driving again.
I mean it really scares me a lot, but I am almost on my
six-month anniversary and I will be clear to go.
24 weeks counting until I can drive again.
I could not drive for 6 months so that really frus-
trated me practically because I wanted to drive when
I wanted, where I wanted, and I became dependent on
my husband practically all the time and I occupied his
time that he needs for himself.
In addition to curtailing driving, patients also have to
stop drinking alcohol post-seizure and some have to stop
working. Some are instructed to avoid triggers such as caf-
feine and strenuous activities and exercising. Some patients
curtail activities such as long car trips and vacations, and
some refuse to go out alone. Participants report being
treated differently by their family and friends following
their seizure. In particular, family and friends are fearful of
the seizures recurring. Some patients feel embarrassed and
stigmatized by others. Understandably, participants report
feelings of dependence on others and some patients feel so
stigmatized they are reluctant to be around other people.
Experience has negative financial ramifications
for some patients
Study participants included both insured and unin-
sured patients. For participants with health insurance,
the majority of follow up and cost of medication is cov-
ered. For patients enrolled in the research trial portion
of the related project, follow up care and medication cost
were covered on a sliding scale basis. For participants
who are not enrolled in the trial and who do not have
health insurance, cost of follow up and medication is
paid out-of-pocket. For patients not on health insurance,
sometimes EMTs are the only line of emergency medical
care; some uninsured participants report having declined
ambulance transportation to the hospital because of the
cost. In addition, some participants, particularly those
without insurance, are unable to fill the prescriptions due
to cost.
Medical testing, treatment, and discharge is confusing
and uninformative
Some participants have EEGs conducted in the ED,
and some do not. Regardless of what tests are conducted,
much of the testing conducted in the ED does not indi-
cate what is wrong with the patients, or comes back nor-
mal. This is not always the reassurance one might
suppose it would be, because the patients are desperate
for answers as to what has happened to them, and want
indications that the ED staff takes their traumatic expe-
rience as seriously as they do. While sometimes the test
results indicate abnormal brain activity or a possible di-
agnosis, and other results rule out other medical condi-
tions such as a brain tumor, some test results from the
ED are inconclusive. Participants describe being nervous
leaving the ED without firm knowledge of what is wrong
and what can be done.
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Most patients are not discharged with medication/prescriptions
Initiation of antiepileptic medication by an ED physi-
cian is not currently standard of care for the majority of
first-time seizure patients, and patients are not typically
started on medication prior to departure from the ED. If a
patient has epilepsy, the longer time to initiation of
antiepileptic medication can be dangerous and the patient
is likely to experience a second seizure prior to outpatient
follow up. As expected, this recurrence is frightening for
patients and families and leads to a high degree of uncer-
tainty.
You kind of go home with no medication from the
ER…I am thinking, I am a mom, I am a working
mom…What’s next?
Medications prescribed in the ED
For patients who are prescribed medication in the ED,
many take it as prescribed until the arranged follow up
with a neurologist. However, other patients refuse the
medication even though the epileptologist recommends it
because of worry about potential side effects, fear that the
ED is not the appropriate setting to start a new long-term
medication, a lack of one-on-one interaction with a neu-
rologist in the ED, and a disbelief that the medication will
fix the underlying issue.
Discharge from ED to home
As we have stated, the majority of patients, whether
or not they have an EEG, are discharged from the ED if
the work-up is unremarkable. As part of the discharge
process, patients are sent home with basic instructions for
follow-up care and instructions on the conditions under
which they should return emergently to the ED. Patient
experience varies with regards to the discharge process.
Some ED staff makes a clear effort to elucidate the dis-
charge plan and provide instructions that patients perceive
as clear and informative. Sometimes instructions are given
to the patient him/herself, other times to a family member
because of the patient confusion. Both patients and fami-
lies can leave the ED with a clear explanation and clear
course of action for discharge. However, for some patients
and/or families, the discharge plan is confusing and per-
ceived to be uninformative. Some participants leave the
ED without an understandable explanation of what hap-
pened to them both during the seizure itself, and with re-
gards to the ED stay.
There is not even a discharge paper that says
seizure. What does that mean? You know, what is a
seizure? You know, just what does this mean? Because
I did not know, you know? You hear the word seizure.
You hear the word epilepsy, but nobody knows what
that is.
Everyone in the emergency room was very nice but
I also remember feeling like, they are monitoring her
to see to make she is okay, but then I leave not neces-
sarily feeling any better because I do not have an-
swers. So then it was like, I guess I won’t go to the
emergency room anymore.
Because you go home with lots of questions and
then Lord have mercy you start googling and then it
is all over.
Referrals from ED are standard of care but anxiety
inducing
Follow up appointments are a long wait
When EEGs and other tests are conducted in the ED,
participants are aware that the results are read by a doctor
generally, or a neurologist or specialist specifically. For
all participants who have an EEG in the ED, the test re-
sults lead to a follow-up appointment with a neurologist.
Moderator: Did you have an EEG while you were
here?
Participant: Yes, I did, and I guess they noticed
something little, in the left side of my brain, but I have
not had the MRI yet to figure out if they can find the
cause.
I had every test in the world done, and they all said
I was fine, I knew that I was not okay.
Even for those with a relatively short period of time
before their follow-up appointments, the idea of having
to wait any period of time for more information evokes
similar feelings of uncertainty and fear.
It is a long wait. When you can’t get in somewhere
right when you are waiting.
Participants understand that the purpose of a follow-
up appointment is to further test for the cause of their
seizure, and a follow-up with a neurologist seems like the
natural next step for their condition after leaving the emer-
gency department. Continued long-term follow up care
after a first-time seizure does make participants feel com-
forted and reassured by having a physician tracking their
medical issues on a regular basis. For those who are on
medications, these treatments make their illnesses more
manageable and are reassuring to patients.
[The treatments] offer me peace of mind because
I am not going through the scare that I will have an-
other one.
Patients who had an EEG performed in the ED as part
of the ongoing research project mentioned earlier includes
adults who presented after an uncomplicated first time
generalized seizure. Enrolled patients undergo a CT scan
and a basic laboratory work-up in the ED. If this work-up
is unremarkable, patients then have an EEG performed in
the ED. The EEG is then immediately read by the on-call
epileptologist (neurologist specializing in the treatment of
epilepsy). Based upon the EEG findings, the epileptolo-
gist determines whether or not the patient has epilepsy
warranting immediate initiation of antiepileptic drug ther-
apy. If so, the patient is started on medication prior to dis-
charge from the ED. All participants are discharged from
the ED after the first-time seizure. These individuals also
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have a follow up appointment made for them before they
are discharged from the emergency department and –as a
result of being enrolled in that study – are guaranteed fol-
low up in at least 2-3 weeks whether or not they have in-
surance. This follow up makes patients feel reassured and
cared for. They know that although they had been through
a traumatic experience, they are going to be followed
upon on an outpatient basis.
The main discharge care was following up with the
appointment with the neurologist.
The thing I would I remember is that he made a re-
ally strong attempt to get me in to see a neurologist
quick. He could’ve just said, ‘Oh, go home and rest,
you did not have enough sleep,’ but that really was the
most important thing, he did not try to diagnose as
much as he said, ‘Okay, I understand this is a neuro-
logical issue you need to get to see a neurologist.’
So I saw him 2 days later and I don’t remember if
they read the EEG that night and said any kind of on
it anyway but I knew I would be right in to see him.
I think it was a month after I had the seizure. They
ordered the exam and it was between two and three
weeks. They found out that I have something wrong
with the left side of my brain and that if it was going
to get worse, something like that, and if the seizure
were going to present more often then they would have
to do surgery, but thank God for now I continue with
the medicine. After that seizure I had in July, I had an-
other one in December 2013, at that time I did not go
to the emergency room, I went to the doctor.
In comparison, the majority of patients do not have an
EEG in the ED and have to arrange outpatient follow-up
on their own. This uncertainty makes those patients feel
uneasy and anxious. To most, the main concern is the time
between being discharged from the emergency depart-
ment and the time to follow up with a neurologist. Often,
this is weeks to months without an explanation for their
ED presentation and without antiepileptic medications if
the patient needs them.
Horrible. We had to wait for weeks as well. Actu-
ally, I don’t think we were referred from the hospital.
I remember going to my pediatrician and having a dis-
cussion of who I wanted, because I work with special
needs kids and I knew neurologists. I was like, I want
her and he was for it. I think that is where our referral
came from, but also that in the interim time is when
he was put on Depakote over the phone from the neu-
rologist on call.
Some participants are also still struggling with med-
ications months after the seizure experience. Some have
issues with medication side effects requiring multiple
medication changes while some are frustrated with the un-
certainty of how long they will remain on medication, or
if they will ever be able to be taken off.
The levetiracetam is what they gave me in emer-
gency room and the doctor changed the medicine to
another that did not depress me. This was the reaction
from my body to the medicine.
They gave me something I don’t remember what it
was, I know the first drug I was prescribed by Dr. _____
was Dilantin, and that made my gums swell very much.
So then they stopped Dilantin and they went to one
other one. I can’t remember the name of that one. Now
I am on carbamazepine.
Patients expect standard of care to be performed
in ED
At the end of the focus groups, participants were asked
a series of hypothetical questions in an attempt to better
understand their reactions to potential diagnosis and treat-
ment options in the ED. Participants who received an
EEG in the ED were asked how they would feel if no test-
ing was done in the ED, and these participants believe that
testing, including vital signs, blood work, head imaging,
and EEGs, must be part of the standard of care for first-
time seizure patients. A lack of testing would have been
unsettling and anxiety provoking and would have resulted
in a lack of trust in the ED had no testing been completed
following a first-time seizure.
Participants who were not prescribed medication in
the ED were asked what they would have thought of re-
ceiving a prescription for antiepileptic mediation in the
ED prior to discharge. These participants responded that
because of the trauma of the seizure itself and the over-
whelming confusion that existed in the ED, they would
have been afraid and would have been unable to under-
stand the medication instructions. These patients believe
that the ED visit does not offer ample time for discussion
of the medication and this would be more suited for an
outpatient visit with a specialist who has the time to get a
detailed history and who has the ability to adequately de-
scribe the medications to the patients. In addition, these
participants would have wanted time to process what had
happened to them before starting a medication. This re-
sponse differs from that of participants who did receive
medication prior to ED discharge who were reassured by
being started on the medication in the ED. Interestingly,
regardless of the testing performed or medication pro-
scribed in the ED, all participants think their course of di-
agnostic testing and treatment was the most appropriate
course of action.
In addition, all participants – regardless of their testing
or medication status – strongly feel that, post-ED visit,
rapid follow up with a specialist within two weeks is es-
sential. If the wait for a specialist will be longer than that
(and it was a months-long wait for some participants),
even those participants who were reluctant to begin med-
ication from an ED visit alone, prefer that to being sent
home with a long wait for diagnosis and treatment. Even
hesitant participants are more open to diagnosis and treat-
ment in the ED if they are assured that it would be done
in consultation with a specialist.
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In addition, the expectation for treatment in the ED is
that that patients would receive rapid testing in the ED, in-
cluding blood work, CT scan or MRI and an EEG. Some
participants think that a neurologist should see a first-time
seizure patient prior to discharge from the ED. Medication
should be initiated promptly where it is indicated.
Well I think they got her in right away. What I re-
member, someone was talking to us all the time. I think
is really important that people are seen quickly.
Anyone having seizures needs to be treated soon,
they not need wait around for weeks or a year having
seizures.
At first it’s more important to get diagnosed prop-
erly, then to get on medications.
Regardless of their experience in the ED, most pa-
tients perceive the ED physicians, nurses, and staff to be
caring, compassionate and gentle and perceive that a gen-
uine effort was put forth to help the patient feel reassured
and taken care of. The patients who do not speak English
recall a clear effort to obtain an interpreter so that the pa-
tient and the family understood what was happening.
At the end of the focus groups and phone interviews,
participants were asked their perceptions of standard of
care for first-time seizure patients. The majority of par-
ticipants were unsure of how to answer. Most patients
trust that medical professionals will act in their best inter-
est and give them the standard of care, whatever that is.
I trust in them. I trust in the doctor. I only listened to
what they said that happened to me and I followed the rec-
ommendation of the specialist.
Outpatient follow-up
After ED discharge, first-time seizure patients typi-
cally require follow up with a neurologist. The outpatient
follow-up allows for continued management of the pa-
tient’s medications as well as a venue for arranging further
testing if needed. For participants, neurology follow-up
was typically very detailed and covered a much more de-
tailed medical history than in the ED. This appointment
was where the neurologist reviewed the work-up that had
already been completed in the ED.
When I got the EEG in the ER, they had a group
of nurses and I think a couple of doctors, going ahead
and looking at what was done. They said that it looked
normal to them. Afterwards we went to Dr. [epileptol-
ogist] and that’s when he told us that there was [an
abnormality], that if you weren’t looking for it, you
would not see it, but he saw it. It was one of the top
lines. I don’t remember which part of the brain that is
and then he said it was on the left.
In addition, during follow up, additional CT scans,
MRIs, EEGs, blood work, and other testing were com-
pleted. Similar to the ED visit, participants brought family
and/or friends to the outpatient visit. The general theme is
that the outpatient neurology visit was where participants
felt most understood and reassured, and where they were
better able to listen to and understand their diagnostic and
medication information, compared to the ED visit. Al-
though the patients diagnosed with epilepsy in the ED had
received their diagnostic information prior to discharge
from the ED, for most of them, it was not until the neurol-
ogy follow up visit where they felt they had received the
official diagnosis. A few participants some still had hesi-
tancy toward their healthcare providers even after the out-
patient follow up; they were nervous about trusting the
physician and any recommendations that were made, and
were frustrated and did not feel as though they were receiv-
ing adequate explanation of what had happened to them.
I just remember thinking, I don’t feel good about
this. A, I don’t know you, B, you don’t know my child.
I mean we had already been in the hospital twice and
he had this bit of information on a computer some-
where and who knows if he was looking at it. So we
were on Depakote and he came off if for twenty-four
hours because it was such a bad call. It was so horri-
ble for him and I don’t remember how we got through
this first two weeks because it was terrifying. It was
absolutely terrifying.
Discussion
First time seizure patients in the ED experience cog-
nitive difficulties, fear, stigma and embarrassment, and
uncertainty. Regardless of what diagnostic testing or med-
ication prescriptions patients are given in the ED, patients
trust medical professionals to act in their best interest dur-
ing this time. Patients are generally satisfied with the care
received in the ED, whether or not they had an EEG and
early diagnosis and treatment, because they trust the
healthcare providers to provide them with the current
standard of care. Those who receive this testing in the ED,
however, report alleviation of anxiety and reduced risk of
future seizures or complications. All patients have expec-
tations of rapid testing, diagnosis, and treatment. Perform-
ing medical tests, such as an EEG, in the ED can offer
patients an explanation for their seizures and offer peace
of mind for patients and families. An examination of pa-
tient experiences and patient-centered outcomes for first
time seizure patients in the Emergency Department shows
a divergence between clinical and therapeutic expecta-
tions and patient and family expectations. In fact, while
clinical considerations for conducting an EEG in the ED
for first time seizure patients are ambivalent, patient out-
comes considerations for testing in the ED seem to be
much clearer. Focus group members state that ED EEG
performance may result in quicker initiation of anticon-
vulsant treatment, aids patients in expediting close follow
up with an outpatient neurologist, decreases patient risk
for further seizures, and reduces the number of patients
who are lost to follow up. Additionally, those who re-
ceived EEG testing report alleviation of anxiety and per-
ceived reduced risk of future seizures or complications.
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However, there is some ambivalence expressed for ED
EEG testing. It appears that clinical indications in favor
of EEG testing –earlier and more definitive diagnosis, ear-
lier treatment of potential epilepsy and resulting higher
treatment efficacy, lessened chance of subsequent seizure
episodes – are fairly evenly balanced with clinical reasons
for not conducting EEG testing in the ED – lower treat-
ment compliance because of reduced patient mental ca-
pacity and compromised memory, lack of opportunity for
lengthy discussion between patient and physician, and the
moderate rate of positive epilepsy diagnosis among first
time seizure patients, and our focus group findings bear
this out. However, when patient and family experience is
taken into account, the argument for EEG testing is much
stronger. Patient and family fear and uncertainty are alle-
viated through earlier testing and diagnosis and earlier
presentation of health information. The desire on the part
of the patients and their family members for rapid diag-
nosis, explanation, and treatment leads to a bias towards
desiring EEG testing in the ED, especially because it is
felt to expedite outpatient follow-up. Nonetheless, cou-
pled with the earlier testing is a strong need for detailed
(oral and written) health information to be provided to pa-
tients and families in the ED, and for rapid (within two
weeks) follow up with a specialist who can review diag-
nosis and treatment options with the patient and family.
Also of particular consideration is that, regardless of
what recommendation the ED staff makes – to conduct
EEG testing in the ED or not – patients will be satisfied
with the recommendation because of a positive ramifica-
tion of physician hegemony – the belief that if the physi-
cian recommends a course of treatment, it must be the
standard of care and can be trusted to be the best option
for the situation.
Despite the patient-centered outcomes mandate of the
ACA, shared decision making can only occur in a climate
of two-way information and knowledge sharing. The cog-
nitive impairments association with seizures makes that
requirement difficult if not impossible to achieve in the
ED at or close to the time of onset. Yet, ED providers’
knowledge and understanding of the fear; confusion; and
desire for rapid diagnosis, explanation, and treatment on
the part of the patient leads to a bias towards recommend-
ing the earlier testing, diagnosis, and treatment associated
with EEG testing in the ED. Coupled with the earlier test-
ing, however, is a strong need for detailed (oral and writ-
ten) health information to be provided to patients and
families in the ED and for rapid (within two weeks) fol-
low up with a specialist who can review diagnosis and
treatment options with the patient and family.
Conclusions
In this paper, we suggest that obtaining and interpret-
ing an EEG in the ED could expedite patient work-up,
treatment, and disposition. In addition, as we suggest in
this paper, earlier diagnosis and treatment could possibly
ease anxiety and improve patients’ experience.
In summary, adult seizure patients have difficulty re-
membering and understanding the events surrounding
their ED visit due to their medical state at that time. Pa-
tients and their family members trust medical profession-
als to act in their best interest during this time, and trust
that health care providers will perform the standard of
care for evaluating first time seizures. While patients ac-
knowledge reasons for not performing ED EEGs, overall
they express partiality for performing EEGs in the ED,
because they can result in quicker initiation of testing and
anticonvulsant treatment, aid patients in expediting close
follow up with a neurologist, may decrease risk for further
seizures, and reduce the number of patients who are lost
to follow up. Performing EEGs in the ED and initiating
appropriate anticonvulsant therapy for those patients who
are at high risk for future seizures expedites appropriate
follow up care, decreases risk to patients and society, and
offers patients a sense of security and control over their
medical condition. In addition, performing medical tests
such as an EEG in the ED can offer patients an explana-
tion for their medical state and offer peace of mind for the
patient and his/her family.
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