Epilepsy & Behavior 31 (2014) 346–350

Contents lists available at ScienceDirect

Epilepsy & Behavior

journal homepage: www.elsevier.com/locate/yebeh

Factors associated with medication adherence in patients with epilepsy and

recommendations for improvement
Angelia M. Paschal a,⁎, Sarah E. Rush a, Toni Sadler b
a
Department of Health Science, The University of Alabama, Box 870311, Tuscaloosa, AL 35487, USA
b
Via Christi Epilepsy Center, 848 N St Francis St #3901, Wichita, KS 67214, USA

a r t i c l e i n f o a b s t r a c t

Article history: Although it is one of the most common neurological disorders, epilepsy continues to be a highly stigmatized and
Received 21 August 2013 disabling chronic condition. Healthy People 2020 aims for improvement in the health-related quality of life and
Revised 1 October 2013 well-being of Americans, including these medically vulnerable patients. Efforts to research and improve medica-
Accepted 2 October 2013
tion adherence in this population and others with chronic conditions are an important step towards this end. The
Available online 17 November 2013
purpose of this study was to investigate factors associated with adherence and to provide recommendations for
Keywords:
improvement. A cross-sectional survey research design was used in a convenience sample of patients receiving
Epilepsy treatment at a tertiary epilepsy center. Adherence was measured by self-reported missed/skipped medication
Seizures doses and seizure frequencies and by the presence of intractable seizures as indicated in patients' medical charts.
Medication Analysis was conducted with SPSS 21.0 on the data collected from the returned mailed surveys. Among the sam-
Adherence ple of 180 patients, most had some education beyond high school, household incomes of varying amounts, and
Compliance health insurance coverage. Most of the participants were unemployed. Clinical records showed that 46% had in-
Tertiary tractable seizures. About 66% missed taking their medication on a monthly basis, with “forgetfulness” being the
Treatment
primary reason. Adherence (seizure frequency) was associated with being employed (P = .028). Adherence
Employment
(complying with medication treatment plan) was also associated with “medication reminders” (P = .002) and
Education
Reminders educational attainment (P = .008). The findings indicate a continued need to explore the complex issue of adher-
ence. The findings also highlight the need for health education and other public health and medical professionals
to design effective strategies to connect patients with employment opportunities and other resources. Efforts are
also needed to help provide information and build skills among patients with epilepsy that would lead to im-
proved medication adherence and management.
© 2013 Elsevier Inc. All rights reserved.

1. Introduction with instructions or recommendations provided by health professionals

Epilepsy in the United States affects approximately 2.5 million
Americans and has a prevalence rate of 6 to 7/1000 [1]. Epilepsy has
been associated with severe physical, emotional, financial, and social
consequences [2–7]. Although epilepsy is one of the most common neu-
rological disorders, this relatively disabling and stigmatizing chronic
disorder has not been adequately addressed as a public health concern.
Specifying the ten-year national health objectives for the U.S., Healthy
People 2020 has a new objective which calls for improvements in
health-related quality of life and well-being of American citizens, in-
cluding medically vulnerable populations [8]. Continued research and
programs designed to improve adherence are important steps in these
efforts.
Adherence, also referred to as “compliance,” is the degree to which
patients' treatment-related behaviors (e.g., taking medication, keeping
follow-up medical appointments, changing dietary habits) are consistent
⁎ Corresponding author.
E-mail addresses: apaschal@ches.ua.edu (A.M. Paschal), rush005@crimson.ua.edu
(S.E. Rush), toni.sadler@viachristi.org (T. Sadler).
[9,10]. Among individuals with epilepsy, adherence to medication thera-
py in particular is especially critical. Failure to comply with medication
regimen puts patients who are noncompliant at increased risk for further
seizures [11,12], increased emergency room admission due to seizure-
related injuries, and increased risk of motor vehicle accidents [13].
Most individuals with epilepsy are able to effectively treat their disorder
with antiepileptic medications [14,15]. Yet, the issue of adherence still
persists as a tremendous obstacle to optimal treatment [16–18].
The literature regarding adherence among patients with epilepsy is
relatively limited and primarily focused on three areas: medication-,
epilepsy-, and individual/family-related factors. Among medication-
related factors, the research suggests mixed results. In some studies,
the number of medications prescribed and number of times medication
was taken daily were found to be inversely associated with adherence
[11,19]. Nonetheless, a couple of recent studies have not supported
these findings [18,20].
Another medication-related factor pertains to antiepileptic drug side
effects. Research has linked side effects to nonadherence [21]. Yet, in
research that examined adherence and satisfaction with medication, re-
sults indicated that higher adherence was linked to greater satisfaction

1525-5050/$ – see front matter © 2013 Elsevier Inc. All rights reserved.
http://dx.doi.org/10.1016/j.yebeh.2013.10.002
 A.M. Paschal et al. / Epilepsy & Behavior 31 (2014) 346–350
with medications. Essentially, if patients perceived the medication to be
effective, they were more likely to adhere to the medication regimen,
even with side effects [18]. In that same study, adherence was higher
among patients that consumed older medication, even though these
medications normally have greater side effects.
Among epilepsy-related factors associated with adherence, the results
have also varied. In earlier studies, researchers did not find relationships
between adherence and seizure type, severity, and frequency [21,22].
Nonetheless, in recent research, individuals with longer durations of ep-
ilepsy, for instance, were found to have higher levels of adherence [18].
Among individual- and family-related factors, adherence has been
positively associated with age, regular medical visits, and communication
with one's physician [21]. Medication adherence has been surprisingly
associated with families reportedly with higher life events (e.g., marriage,
divorce, births/adoptions, deaths, change of residence) and acculturative
risks (likelihood of individuals from a given culture to adapt to and take
on the characteristics of another culture) [22]. In addition to patient atti-
tudes, patient beliefs have also been investigated. Negative beliefs about
the importance of medicine and adherence, as well as self-identifying as
black non-Hispanic in comparison to white non-Hispanic, have been as-
sociated with decreased adherence [23,24]. Feelings of stigma have also
been associated with decreased adherence [21].
Taken together, the varying and sometimes contradictory study re-
sults described above point to a need for further research regarding ep-
ilepsy and adherence with diverse populations with epilepsy. The
variation in research findings is likely due to population, study location,
and methodological differences between studies. The research demon-
strates strong international interest in adherence and epilepsy and the
growing awareness of this issue. Still, the literature is somewhat limited
in scope, with significant gaps in knowledge about factors that influence
adherence among patients with epilepsy. The purpose of this study was
to address this gap and provide recommendations for improvement.
2. Methods
2.1. Study design and patient selection
Using a cross-sectional descriptive study design, researchers mailed
surveys to a convenience sample of adult patients receiving care at the
Via Christi Epilepsy Center in Wichita, Kansas, USA. Patients were eligi-
ble for participation if they were at least 18 years old. Study approval
was obtained from the Institutional Review Board's Human Subjects
Committee-II at the University of Kansas School of Medicine-Wichita,
the Via Christi Regional Medical Center, and the University of Alabama.
2.2. Instrument development
University researchers expanded upon an instrument created by
Cramer et al. [9] which was designed to determine whether certain as-
pects of treatment affected adherence and to explore seizure occurrence
following missed medication doses. Twenty-one questions were added
to the original 10-item mailed survey. The additional questions ad-
dressed epilepsy treatment (e.g., clinic visits for epilepsy care), reasons
for nonadherence (e.g., forgetting, concern about side effects), seizure
frequency, and additional demographic information.
After several iterations of the instrument, feedback was obtained
from an epileptologist and physician assistant who worked at the epi-
lepsy care center. The instrument was subsequently piloted on five pa-
tients with epilepsy to evaluate language, terminology, survey length,
missed questions, etc. Survey questions were modified as a result of
the feedback obtained.
The resulting survey was two pages long with survey items on the
front and back of both pages. Survey items were presented in structured
response formats. The Flesch–Kincaid Grade Level for the instrument
was 6.4, which indicated that the survey was expected to be under-
standable to an average student in sixth grade or to individuals whose
347
literacy skills were at this level. The survey's Flesch Reading Ease was
72%: scores range from 0 to 100, with higher scores indicating that the
material is relatively easy to read.
2.3. Data collection procedures
The survey and a cover letter describing the study were mailed to
525 study-eligible adult patients from the center. Patients were re-
quested to voluntarily complete the survey and return it to the center.
A self-addressed envelope was provided with the survey. No participant
incentives were provided. Upon receipt of the returned surveys, the
physician assistant at the center reviewed the participants' correspond-
ing medical charts and indicated on each survey whether the patient's
seizures were controlled or intractable. The university researchers
were then provided the completed surveys for data entry and analysis.
2.4. Data analysis
To assess adherence, the following outcomes were measured:
missing/skipping medication doses, seizure frequency, and intractable
seizures as indicated by clinical data. Demographic variables, health be-
haviors (e.g., clinic visits, number of times medication taken daily), and
other factors were tested for their association with the adherence
outcomes. Descriptive statistics were conducted with variables, and sig-
nificance was defined as an alphab.05. Univariate analysis and nonpara-
metric tests (Pearson chi-square and Fisher's exact tests) were used to
examine statistical associations. The analyses were conducted using
the Statistical Package for Social Sciences (SPSS Version 21.0) for
Windows.
3. Results
3.1. Sample demographics
A total of 180 completed surveys were returned (N = 180) for a re-
sponse rate of 34%. Demographically, the majority of respondents were
female (57%), white non-Hispanic (85%), and 25–46 years old (53%). In
addition, many had a high school diploma or equivalent (42%) and some
college education or other forms of training/education post-high school
(32%). Most participants were unemployed (55%), and a little over one-
half (53%) had annual household incomes of less than $30,000. Of the
participants, 93% had health insurance coverage, and 91% had medica-
tion prescription coverage as well. Participants were also asked if they
received assistance in completing the survey. Seventy-three percent
(73%) responded that they completed the survey alone, 11% reported
using assistance in completing the survey, and 16% had a caregiver or
someone else complete the survey on their behalf. The mean number
of individuals living in the participants' households (including the par-
ticipant) was 2.5, and the range of household members was one to
seven (22% of participants lived alone) (Table 1).
3.2. Adherence outcomes
Adherence outcomes were measured by self-reported missed/skipped
medication doses and seizure frequency and intractable seizures as indi-
cated by patients' medical charts.
The mean number of weekly seizures was 1.52 among participants.
Most participants (76%) did not experience seizures on a weekly basis.
Nine percent (9%) reported that they experienced seizures 1–2 times
per week, 7% indicated 3–4 weekly, and 8% specified ≥5 every week.
Among the study participants, 37% indicated that they missed taking
a dose of their medication at least once a month on average. Seventeen
percent (17%) reported missing a dose twice a month, 13% specified
three times or more, and 33% indicated that they have never missed a
dose. Among those that missed a dose, 39% reported that they experi-
enced a seizure following missed dosages. Twenty-one percent (21%)
348 A.M. Paschal et al. / Epilepsy & Behavior 31 (2014) 346–350

Table 1 reason for medication nonadherence was forgetting (68%). Additional

Patient demographics. reasons are provided below. None of the factors were significantly relat-
Gender 57% (n = 91) female ed to the adherence outcomes.
43% (n = 68) male
Race/ethnicity 85% (n = 135) white non-Hispanic
68% Forgot to take medication
7% (n = 11) black non-Hispanic
5% Cost of medication
3% (n = 4) Hispanic/Latino
3% Medication side effects
5% (n = 8) all other racial/ethnic groups
1% Epilepsy not severe
Age range 11% (n = 19) 18–24
.06% Had different opinion about best treatment
53% (n = 94) 25–46
.06% Did not want drugs/chemicals in body
32% (n = 57) 47–68
0% Did not understand medication labels or directions
4% (n = 8) 69 and older
16% Miscellaneous
Educational attainment⁎ 6% (n = 10) less than high school
42% (n = 67) high school, general equivalency
diploma (GED)
3.6. Factors that facilitate medication adherence
32% (n = 50) some college, trade/technical
training beyond high school
17% (n = 26) bachelor's degree Inquiries were also made about factors that patients considered as
3% (n = 5) Master's degree or higher helpful in their efforts to be adherent. One of these factors, “medication
Annual household income 53% (n = 78) b$30,000 reminder strategies” was associated with adherence, specifically with
22% (n = 32) ≥$30,000–49,999
missing/skipping medications (P = .002). The remaining factors were
25% (n = 37) ≥$50,000
Employment status⁎ 45% (n = 80) employed not associated with any of the adherence outcomes.
55% (n = 97) unemployed
⁎ Significant with adherence, p b .05. 68% Physician's clear explanation of epilepsy and treatment
46% Medication reminder strategies⁎ (e.g., pillbox, displayed medication schedule)
39% Convenient medication dosage schedule (e.g., taking medicine only once a day)
39% Availability of medications with fewer side effects
29% Affordable medication prescription costs
reported that they tell or call their physician when they miss taking
their medication. ⁎ Significant with adherence, p b .05.
According to data reported from the participant's clinical charts,
epileptic seizures were controlled among 54% of the participants. 4. Discussion
Forty-six percent (46%) of the participants' seizures were intractable
or uncontrolled. Individuals with epilepsy are a vulnerable population because of the
disabling and highly stigmatizing nature of their chronic disorder. Epi-
lepsy is associated with severe physical, emotional, financial, and social
3.3. Demographic characteristics and adherence
consequences [2–7]. Specifying the ten-year national health objectives
for the U.S., Healthy People 2020 calls for improvements in health-
Among the demographic variables analyzed, employment status
related quality of life and well-being of American citizens, including
and educational attainment were linked to either of the adherence out-
medically vulnerable populations [8]. Continued research and programs
comes. Specifically, being employed was statistically associated with
designed to address adherence are important steps in these efforts. The
decreased seizure frequency compared to participants that were unem-
purpose of this study was to identify and increase understanding of fac-
ployed (P = .028). Increased adherence to medication (i.e., fewer
tors that are associated with adherence among individuals with epilep-
missed/skipped medication doses) was linked to higher educational at-
sy and provide recommendations for improvement. The study findings
tainment (P = .008).
indicated that three factors were associated with adherence: employ-
ment, educational attainment, and medication reminder strategies.
3.4. Treatment and adherence
4.1. Adherence and suggested directions
Survey participants were asked how often they visited a neurologist
or other health professional for epilepsy treatment. Twenty percent The study findings indicated that “forgetfulness” was the primary
(20%) indicated that they maintained clinic appointments once every reason for medication nonadherence in about two-thirds of patients in
three months or in shorter time intervals (e.g., once a month). A little this sample. Not surprisingly, then, reminder strategies, such as using
over one-half of the sample (54%) reported that their visits were a pillbox and displaying medication schedules, were helpful to them
once every six months. Visitation frequency was not associated with in their attempts to be adherent. This factor, use of medication re-
adherence. minders, was also associated with decreased seizure frequency. While
All but one of the study participants were taking antiepileptic drugs. more than two-thirds indicated that receiving clear explanations and in-
Many had been taking medication for 11–20 years (24%) and even lon- structions from their physicians about epilepsy and treatment was help-
ger (20+ years = 38%). Including their antiepileptic medication, the av- ful to them, this factor was not associated with adherence outcomes.
erage number of different medications taken daily by participants was Nonetheless, these findings have implications for further research and
4.02. Most participants took medication twice a day (62%) or three efforts to design effective strategies to assist patients in being adherent.
times (22%) a day, with a daily mean of 2.34. The mean number of Unemployment and underemployment among individuals with ep-
total tablets/caplets consumed on a daily basis was 8.09, with patients ilepsy are substantially higher than the rates in the general U.S. popula-
taking from 0 to 30 tablets daily. Adherence was not associated with tion. Similar disparities are found in income; annual household income
medication duration, number of different medications taken, daily among individuals with epilepsy is significantly lower [5]. In the current
doses of medication, or total tablets/caplets consumed daily. study, employment status was associated with adherence. Seizure fre-
quency among employed participants was much lower than those
3.5. Reasons for nonadherence among unemployed patients. The link between employment and adher-
ence in this study is not surprising. Research suggests that some of the
Survey participants were asked to indicate the reasons why they had same factors that affect adherence might also be associated with em-
missed or skipped a dose of medication. The most commonly reported ployment. For instance, several adverse social and psychological factors
 A.M. Paschal et al. / Epilepsy & Behavior 31 (2014) 346–350
have been associated with epilepsy. These have included depression,
anxiety, low self-esteem, perceived and actual stigma, discrimination,
adverse physical changes/disabilities, and others [3,4,6,25–30]. Though
not necessarily being linked directly to adherence, the social and psy-
chological effects of these factors can interfere with optimal treatment
and self-efficacy and subsequently affect one's inability to adhere to
treatment and seek or maintain employment [6]. Nevertheless, among
individuals with epilepsy who are actually employed, stigma has actual-
ly been found to be lower compared to those who were unemployed [4].
Efforts to connect individuals with epilepsy to employment or employ-
ment services should be considered. The complex connection between
adherence and employment should be further explored, as well as
those mediating factors that might play a role.
4.2. Study limitations and implications for epilepsy research and practice
One of the limitations of this study relates to the patient self-report
method used. Self-report measures are the most commonly used mea-
surement in most studies of medication adherence [10,31]. Previous
studies have used them to assess nonadherence among patients with
epilepsy, including the Cramer et al. survey that was used in the current
study [11,17,18,32,33]. These studies have presented mixed results
which indicate a need for more accurate measurement of seizure con-
trol [18]. Supplementing self-report data with clinical information
about seizure frequency (as was done in the current study) can help ad-
dress these limitations [18].
The current study validated patient reports by using medical record
information to confirm seizure control. Still, it has been found that even
with medication, seizures persist in 20–35% of epilepsy cases [14,34].
Therefore, this study could have been strengthened by adding a direct
method (e.g., measurement of antiepileptic medication levels in blood
plasma or serum) or indirect method of adherence (e.g., pill counts,
electronic monitors, prescription refill records, and visit adherence)
[10,22,31,35]. Standardized methods of medication use are among the
most accurate means of measuring nonadherence [12,18–20,36]. Yet,
because of limited resources at the time the current study was conduct-
ed, the researchers were unable to use some of these measurements
(e.g., technology for “smart pill bottle”). In addition, the patients at the
study's epilepsy center did not use a centralized pharmacy or health-
care system. Therefore, obtaining their pharmacy records or medical
claims information was not feasible given the time it would have
taken to obtain the information from their varying sources. Nonetheless,
the methods employed in the current study have been used in other ep-
ilepsy adherence research, and the findings contribute to the literature
on this topic for those receiving specialized epilepsy care.
Another limitation pertains to the convenience sample which
consisted of patients receiving tertiary treatment for epilepsy. It is pos-
sible that adherence might be different in this sample as compared to
patients who do not receive specialized care and reside in other regions
of the country and beyond. Nevertheless, while a little over half of the
sample had low annual household incomes, there was still variation
across the socioeconomic spectrum when compared to income rates
found among patients with epilepsy in other studies [5,29,30]. In addi-
tion, while most of the participants had received postsecondary educa-
tion, this relatively educationally diverse sample further confirmed
research which indicates a connection between education and adher-
ence. While generalization of results might be an issue, the information
in this study contributes to the limited research literature, though fur-
ther research using comparative groups and larger representative sam-
ple sizes are recommended.
Another limitation of this study relates to the limited issues that
were investigated. While the instrument was an expanded version of
another validated instrument, the researchers did not modify the tool
to assess a broad range of issues. Therefore, some factors that are or
could be linked to adherence were not assessed in this study. These in-
clude health literacy, patient attitude, medication side effects, social
349
support, stigma, and other factors [3,31,37]. Adherence is a complex
phenomenon. It is recommended that future research explore these fac-
tors as they pertain to individuals with epilepsy.
Finally, using a written and mailed survey might have increased
response bias. Individuals with literacy challenges might not have
participated. Nearly one-half of all American adults have difficulty
comprehending health information [38]. Research has linked low health
literacy to adverse outcomes such as poor self-management of chronic
diseases [39,40]. Therefore, while efforts were made to ensure that the
mailed survey instrument was developed appropriately in regard to lit-
eracy and terminology used, the study results are likely to be skewed by
overrepresentation of patients with adequate literacy levels. Therefore,
alternate forms of data collection to ensure adequate representation of
low literacy patients is suggested for future research.
4.3. Conclusion
Epilepsy is not only one of the most common neurological disorders,
but it is also one that is highly stigmatized and disabling. As such, adher-
ence can be relatively challenging. The findings in this study indicated
that adherence is associated with employment and medication strategy
reminders, highlighting the critical need for further research and ser-
vices for this vulnerable population. Health education efforts can help
and should be considered at the individual, interpersonal, organization-
al, and community levels to help provide the information and skills
needed among patients with epilepsy to address their needs. An inter-
disciplinary approach among clinicians, researchers, and other epilepsy
professionals is needed to help design and develop effective products,
services, and programs to boost treatment adherence.
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