Epilepsy & Behavior 117 (2021) 107860

Contents lists available at ScienceDirect

Epilepsy & Behavior

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

Seizure action plans in the pediatric population with epilepsy: Uptake,

determinants, and parental interest in a mobile application
Michelle Chiu a, Sharon Peinhof a, Conrado De Guzman a, Mahtab Borhani a, Cindy Siu a, Boris Kuzeljevic b,
Dewi Schrader a, Linda Huh a, Mary B. Connolly a,⇑
a
University of British Columbia and British Columbia Children’s Hospital, Division of Neurology, Department of Pediatrics, Vancouver, BC, Canada
b
University of British Columbia, British Columbia Children’s Hospital Research Institute, Vancouver, BC, Canada

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

Article history: Background: Status epilepticus (SE) is a common pediatric neurological emergency that requires timely
Received 27 November 2020 treatment to minimize morbidity and mortality, yet administration of rescue medications is often
Revised 31 January 2021 delayed and underdosed. Seizure action plans (SAPs) outline the steps that should be taken by parents
Accepted 12 February 2021
and caregivers in case of SE in order to optimize patient outcomes. Our study determined the uptake
Available online 12 March 2021
of SAPs in a pediatric population with epilepsy and assessed parental interest in a SAP mobile application.
Methods: A survey was distributed to parents of patients with epilepsy aged 1 month to 19 years at
Keywords:
British Columbia Children’s Hospital. Following chart review, univariate and multivariate analyses were
Status epilepticus
Seizure action plans
performed to identify variables that predict whether patients have SAPs. A systematic search of available
Epilepsy mobile applications for epilepsy management was conducted.
Pediatric Results: Of 192 participants, 62% have SAPs. On univariate analysis, history of prior SE and male gender
Mobile health increased likelihood of SAP. On logistic regression, Nagelkerke R2 was 0.204 and our model correctly pre-
Seizures dicted 82% of patients with SAPs. 83% of parents were interested in a SAP mobile application. There are
currently 40 mobile applications available for epilepsy management, but only 15% of respondents
reported using them.
Conclusions: There is a need to increase the percentage of patients with epilepsy with SAPs, particularly
in those at greater risk of SE. Most parents would find a SAP mobile application valuable in their child’s
epilepsy management. There is a gap between the high parental interest in mobile applications for epi-
lepsy management and their current use of such applications.
Ó 2021 Elsevier Inc. All rights reserved.

1. Introduction systemic consequences such as hypotension [5,6]. First-line treat-

Status epilepticus (SE) is defined as prolonged seizures greater
than five minutes or multiple seizures without return to neurolog-
ical baseline [1]. It is the most common pediatric neurological
emergency with an incidence of 18–23 per 100,000 [2]. The conse-
quences of SE can be severe and include death, immediate compli-
cations such as metabolic acidosis and rhabdomyolysis, as well as
long-term cognitive impairment, behavioral problems, and epi-
lepsy [3,4]. Timely treatment with rescue medications is crucial
because it increases the likelihood of aborting SE and improves
patient outcomes. Patients who receive delayed treatment are 11
times more likely to die, 2.6 times more likely to have longer con-
vulsive seizure duration, and 2.3 times more likely to have severe
⇑ Corresponding author at: Pediatrics (Neurology), Division of Pediatric Neurol-
ogy, Epilepsy Program, British Columbia Children’s Hospital, 4480 Oak Street,
Vancouver, BC V6H 3V4, Canada. Fax: +1 604 875 2285.
E-mail address: mconnolly@cw.bc.ca (M.B. Connolly).
ment is usually with a benzodiazepine and second-line options
include intravenous phenytoin, fosphenytoin, phenobarbital, leve-
tiracetam, and valproic acid [7–9]. The administration of rescue
medications, however, is often delayed and underdosed, particu-
larly in patients in whom SE starts in an out-of-hospital setting.
In a recent multi-center study in the United States, only 60% of
patients received rescue medication prior to hospital arrival and
the median time of first benzodiazepine administration was 20
minutes [10]. In another multi-center study, three quarters of
patients who received prehospital rescue medication received a
dose that was lower than recommended [11].
Seizure action plans (SAPs) are a communication tool for par-
ents, caregivers, schools, and front-line health professionals such
as paramedics, emergency physicians, family doctors, and pediatri-
cians. They have been demonstrated to serve as an important ele-
ment of patient education because they improve caregiver
knowledge about seizure first aid, enhance caregiver comfort with
providing seizure care, and increase access of rescue medications

https://doi.org/10.1016/j.yebeh.2021.107860
1525-5050/Ó 2021 Elsevier Inc. All rights reserved.
M. Chiu, S. Peinhof, C. De Guzman et al.
in the school setting [12,13]. They are particularly important for
patients with complex epilepsy with a high risk of SE, such as those
with a symptomatic etiology, an early age of seizure onset, or a his-
tory of prior SE [3,14].
At our tertiary pediatric hospital, all patients with seizures and
epilepsy are counseled regarding seizure first aid and seizure
safety. In addition, SAPs are created by the attending pediatric neu-
rologist to outline the steps that should be taken in case of SE,
including the timing and dosing of rescue medications.
In this quality improvement project, we aimed to improve the
prehospital treatment of SE by ensuring that patients at risk of SE
have an individualized SAP. The first phase of our study determined
the percentage of pediatric patients with epilepsy who currently
have SAPs, identified variables that predict whether a patient has
a SAP, and assessed parental interest in a SAP mobile application.
These findings will help guide the next phase of our study in which
we design, implement, and evaluate this mobile application.
2. Methods
2.1. Patients
British Columbia Children’s Hospital’s institutional research
ethics board approved the research protocol and all participants
gave written informed consent. Inclusion criteria for our study
were (1) parent or caregiver of patients aged 1 month to 19 years,
(2) epilepsy diagnosis, and (3) followed by a pediatric neurologist
at British Columbia Children’s Hospital. Participants did not receive
monetary or in-kind compensation. Translators were available for
patients and families who did not speak English.
2.2. Study design
This was a cross-sectional observational study. A 10-question
survey (supplement) was generated through interviews with
experts in the field, including pediatric epileptologists and epilepsy
nurse clinicians. The questions were categorized into three
domains: (a) patient’s history of SE, (b) patient’s SAP, and (c) par-
ental or caregiver interest in a mobile application for epilepsy
management.
We recruited subjects from the inpatient neurology ward and
outpatient clinics at British Columbia Children’s Hospital, as well
as from pediatric neurology outreach clinics throughout British
Columbia. A member of the patient’s healthcare team introduced
the study to potential participants and those who were interested
were provided more information by either a research assistant or
an epilepsy nurse clinician. Written informed consent was
obtained from the survey participants. The paper survey was
administered in person. The results were entered into a de-
identified database and chart review of all patients was performed.
We aimed to enroll 200 patients in one year between October 2017
and October 2018.
2.3. Variables
The primary outcome was the current uptake of SAPs and sec-
ondary outcome was parental interest in a SAP mobile application.
Tertiary outcomes were the family’s current smartphone and
mobile application usage patterns, as well as their interest in other
features of an epilepsy management application.
2.4. Statistical analysis
We used descriptive statistics to summarize patients’ demo-
graphic and clinical characteristics. To determine predictors for
2
Epilepsy & Behavior 117 (2021) 107860
having a SAP, we first performed univariate analysis with chi-
squared test on the following variables: male gender, distance from
tertiary pediatric hospital, epileptologist, presence of developmen-
tal delay or intellectual disability, symptomatic etiology, age of sei-
zure onset  3 years, history of generalized tonic-clonic seizures,
history of prior SE, history of seizure clusters, current number of
antiepileptic drugs > 2, and history of refractory seizures. Bonfer-
roni correction was calculated to determine a significance thresh-
old of 0.005. We then created a multivariate model using
variables that had a p-value of <0.05 and performed logistic regres-
sion analysis. We set the two-sided alpha value at 0.05. All statis-
tical analyses were performed with SPSS Statistics Version 25 (IBM
Corporation, Armonk, NY).
2.5. Systematic search of epilepsy mobile applications
A systematic search of currently available epilepsy mobile
health applications was conducted in January 2021 on the Cana-
dian Apple iTunes and Google Play stores. The search terms used
were ‘‘epilepsy”, ‘‘seizure” and ‘‘status epilepticus.” The inclusion
criteria for mobile applications was (a) focused on epilepsy, (b)
developed for patients with epilepsy or families of patients with
epilepsy, and (c) English language. Mobile applications that were
excluded were those that were (a) designed primarily for health-
care professionals, (b) for conferences or meetings, or (c) for gen-
eral patient population, rather than specifically for patients with
epilepsy.
3. Results
3.1. SAPs
Two hundred and eight subjects were recruited. 192 subjects
met the inclusion criteria, with a mean age of 10.4 years and
52.6% males. 118 patients (62%) currently have a SAP. Of school-
aged patients, 59% reported that their school has a copy of their
SAP (Fig. 1). On univariate analysis, a history of prior SE and male
gender (p-values of 0.001) were predictors of having a SAP
(Table 1). On multivariate analysis, a history of prior SE, male gen-
der, and being followed by a certain epileptologist (of five epilep-
tologists included in our study) met the significance threshold
(p-values of 0.013, 0.004, and 0.018, respectively). Our model’s
Nagelkerke R2 was 0.204. It correctly predicted 82% of patients
with SAP and 46% of patients without, for an overall correct predic-
tion rate of 68% (Table 2).
3.2. Mobile application usage and interest
70% of subjects use iPhones and the remainder use Android
phones. Only 15% currently use any mobile applications for man-
Fig. 1. Uptake of SAPs.
M. Chiu, S. Peinhof, C. De Guzman et al. Epilepsy & Behavior 117 (2021) 107860

Table 1
Predictors of SAPs (significance threshold < 0.005 after Bonferroni correction).

Yes N(%) If yes, N(%) with SAP If no, N(%) with SAP p-value
Male gender 101 (52.6%) 73 (72.2%) 45 (49.4%) 0.001
Lives in Greater Vancouver 63 (32.8%) 41 (65.1%) 77 (40.1%) 0.471
Specific epileptologist 62 (32.3%) 45 (72.6%) 73 (56.1%) 0.029
GDD/intellectual disability 85 (44.3%) 58 (61.2%) 60 (56.1%) 0.085
Symptomatic etiology 102 (53.1%) 66 (64.7%) 52 (57.8%) 0.325
Age of seizure onset  3 years 101 (52.6%) 70 (69.3%) 48 (52.7%) 0.019
Convulsive seizure 94 (49.0%) 65 (69.1%) 53 (54.1%) 0.032
History of prior SE 90 (46.9%) 66 (73.3%) 52 (51.0%) 0.001
History of seizure clusters 127 (66.1%) 78 (61.4%) 40 (61.5%) 0.987
Current no. of AEDs > 2 33 (17.2%) 22 (66.7%) 96 (60.4%) 0.499
History of refractory seizure 89 (46.3%) 55 (61.8%) 63 (61.2%) 0.928

Table 2 SAPs was having a certain epileptologist (of five epileptologists

Variables in multivariate model and results of logistic regression.
Male gender
Specific epileptologist
Age of seizure onset  3 years
Generalized tonic-clonic seizures
History of prior SE
Predicted
No SAP SAP
Observed No SAP 34 40
SAP 21 97
Overall % Correct
Nagelkerke R2
agement of their child’s epilepsy. Of those who do, the most com-
monly used features are seizure trackers and medication remin-
ders. 83% of subjects are interested in a mobile application
displaying their child’s SAP (Fig. 2). In addition, the majority of par-
ents reported that the following features would be valuable in the
management of their child’s epilepsy: seizure tracker (83%), epi-
lepsy team profile (73%), past/current treatment summary (71%),
appointment calendar (71%), medication reminder (63%) and list
of patient resources (59%).
3.3. Currently available epilepsy mobile applications
Our systematic search identified 40 mobile applications
designed for patients with epilepsy and/or their caregivers
(Table 3). 85% allow patients to log their seizures and 28% are
designed to detect seizures either with the phone’s built-in sensors
or through a third-party wearable seizure tracker. 60% remind
patients when to take their anti-seizure medications. 43% allow
users to track the frequency of their rescue medication usage and
28% provide generic information about seizure first aid. Almost
all of the apps rely on patient or caregiver-entered data. Many of
the apps give users the option of sharing their seizure or medica-
tion logs with healthcare providers.
4. Discussion
4.1. Uptake and benefits of SAPs
The uptake of SAPs in our cohort of 192 patients was 62%. On
both univariate and multivariate analyses, variables that predicted
a child having SAPs were a previous history of SE and male gender.
In epidemiological studies, males are more likely to have SE [15].
On multivariate analysis, a third variable that was predictive of
included in our study). Previously reported uptake rates of SAPs
p-value in the United States and United Kingdom range from 45% to 79%
based on reports by family [12,16], and 89% based on reports by
0.004
0.018
physicians [16]. We used family-reported rather than physician-
0.137 reported uptake, because it is unlikely that a family will use their
0.055 child’s SAP if they are not aware of having one.
0.013 The majority of pediatric SE starts in an out-of-hospital setting
[14,17]. Timely treatment by parents, caregivers, schools, and
% Correct front-line health professionals is essential in aborting SE and opti-
45.9%
mizing patient outcome [5,6,14]. Patients with a previous history
82.2% of SE and patients with epilepsy at greater risk of SE should have
68.2% an individualized SAP that outlines the timing, dose, and route of
0.204 administration of rescue medications [18,19]. Previous studies
have shown that families with SAPs were more likely to know
the name of their child’s rescue medication, the recommended
time of administration, and how to respond if rescue medication
was unsuccessful in aborting their child’s seizure [12]. Rescue
medications were also more likely to be available at school for fam-
ilies with SAPs [12].
Furthermore, SAPs may decrease healthcare utilization. In a
multi-pronged quality improvement initiative at a high-volume
tertiary pediatric hospital, which included the implementation of
SAPs, emergency department visits by patients with epilepsy de-
creased by 28% and unplanned hospitalizations decreased by 43%
[20]. On the other hand, two studies including a randomized con-
trolled trial did not show reduction in unplanned healthcare uti-
lization. The trial, however, did show that patients with SAPs
missed fewer clinic appointments and their caregivers reported
greater comfort levels regarding seizure care [13,21].
4.2. Mobile health applications for persons with epilepsy
Smartphones, such as iPhones and Androids, are ubiquitous and
there is a potential role for mobile health applications in the self-
management of patients living with chronic conditions [22–27].
The current literature regarding the effectiveness of mobile health
applications for persons with epilepsy is sparse [28,29]. In our
study, we found that the majority (83%) of parents would find a
SAP mobile application valuable, but only 15% of them currently
use any mobile applications for management of their child’s epi-
lepsy. This is aligned with the findings of a previous survey study,
which found that the majority of adolescents with epilepsy and
their parents were interested in a mobile app for epilepsy self-
management [30].
In our systematic review of epilepsy management mobile appli-
cations that are available for download on the Apple iTunes or Goo-
gle Play stores, almost all of the 40 apps rely on patient-entered
rather than physician or nurse-entered data. The majority allow
3
M. Chiu, S. Peinhof, C. De Guzman et al. Epilepsy & Behavior 117 (2021) 107860

Fig. 2. (a) Parental interest in potential features of an epilepsy management mobile application and (b) Mock-up of SAP mobile application.

Table 3
Summary of mobile applications designed for patients with epilepsy (available in Canada on the iTunes App and/or Google Play stores in January 2021), N = 40. Based on publicly
available app descriptions on the respective app stores and developer websites.

Platform Mobile App Features

Name (Developer) Apple Google Seizure Seizure Med Rescue med Seizure first
iTunes Play log detection reminder tracking aid
1 Alert (Empatica) Yes Yes No Yes No No No
2 Appilepsy (Appilepsy LLC) Yes No Yes No Yes Yes No
3 Aura: Seizure Helper (Stevhen) Yes No Yes No No No Yes
4 Birdhouse for Epilepsy (Birdhouse LLC) Yes Yes Yes No Yes Yes No
5 Bleuberi (H2L2 Technology) Yes No Yes No Yes Yes No
6 E-Epilepsy (HK Society for Rehabilitation) Yes Yes Yes No Yes No Yes
7 ELFy Epilepsy (ELFy Apps) Yes Yes No No Yes No Yes
8 EpApp (Sydney Children’s Hospital) Yes Yes Yes No Yes Yes Yes
9 Epi & Me 2 (HandMe) Yes No Yes No Yes No No
10 EpiCalendar (MedyCal) No Yes Yes No No No No
11 EpiDiary (Irody) Yes Yes Yes No Yes Yes No
12 Epihunter Companion (Epihunter nv) Yes Yes Yes Yes No No No
13 Epilepsy Diary (Epistemic App) No Yes Yes Yes Yes Yes Yes
14 Epilepsy Foundation (Chowgule Mediconsult) Yes Yes Yes Yes Yes No No
15 Epilepsy Health Storylines (Self Care Catalysts No Yes Yes Yes Yes Yes Yes
Inc)
16 Epilepsy Journal (Oily Tree) Yes Yes Yes No Yes Yes No
17 Epilepsy Management (Epilepsy Ireland) Yes Yes Yes No Yes Yes No
18 Epilepsy – Seizures Diary (Medtests) No Yes Yes Yes Yes No No
19 Epilepsy Social Network (MyEpilepsyTeam) Yes Yes No No No No No
20 Helpilepsy (Epione BVBA) Yes Yes Yes No Yes Yes No
21 Inspyre (SmartMonitor) Yes Yes Yes Yes Yes Yes No
22 Mate (Empatica) Yes Yes Yes No No No No
23 MRTLE2 Study (Irody) Yes No Yes No No No No
24 My Epilepsy (Epilepsy Services New Jersey) Yes No No No No No Yes
25 My Epilepsy Record (Epilepsy Diary) Yes Yes Yes No Yes Yes Yes
26 My Epistatus (Veriton Pharma) Yes No Yes No No Yes Yes
27 My Seizure Diary (Epilepsy Foundation) Yes Yes Yes No Yes Yes Yes
28 OpenSeizureDetector Yes Yes No Yes No No No
29 PurpleCare (DHYGEE SA) Yes Yes Yes No Yes No No
30 Seer Yes Yes Yes No Yes No No
31 SeizAlarm Yes No Yes Yes No No No
32 Seizure Alert – My Medic Watch Yes Yes Yes Yes No No No
33 Seizure Counter (SJAPPER AS) Yes No Yes No No No No
34 Seizure Cycle Yes No Yes No Yes No No
35 Seizure First Aide (Epilepsy Foundation Yes Yes No No No No Yes
Minnesota)
36 Seizure Tracker (Seizure Tracker LLC) Yes Yes Yes No No Yes No
37 Seizure Sync Epilepsy Log (Neutun Labs) Yes Yes Yes Yes Yes Yes No
38 Seizure Watch (Brandon Fichou) Yes No Yes No Yes No No
39 Simple Seizure Diary (Luke Berry) No Yes Yes No No Yes No
40 Win Over Epilepsy No Yes Yes No Yes No No
Number of apps 34 29 34 11 24 17 11
Percentage of apps 85% 73% 85% 28% 60% 43% 28%

4
M. Chiu, S. Peinhof, C. De Guzman et al.
patients to log their seizures and provide medication reminders
through an alert feature. Fewer than half of the mobile applications
provide advice about seizure first aid or allow users to track the
frequency of their rescue medication usage. In addition, very few
mobile applications were designed specifically for children and
adolescents [31]. The majority of the applications were designed
primarily for adult patients with epilepsy, which influences their
user interface, the language used, and the medical information
they provide.
The next phase of our quality improvement project involves
creating a mobile application for caregivers of pediatric patients
with epilepsy, which will display an individual’s SAP based on
input from the patient’s primary neurologist. We will elicit and
incorporate feedback from end-users including primary care physi-
cians and pediatric neurologists, parents/caregivers, and allied
health professionals in the application design process. We aim to
implement the mobile application in clinical settings at no cost
to end-users. We will assess the mobile application in accordance
with the Mobile App Rating Scale (MARS) [31], which is an objec-
tive tool that evaluates healthcare-related mobile applications
according to patient engagement, functionality, esthetics, and
information quality. We will also evaluate its effectiveness in pre
hospital SE management including its impact on healthcare utiliza-
tion, patient empowerment, and healthcare-related quality of life.
4.3. Limitations
Our study was a cross-sectional survey of a relatively large
cohort of pediatric patients from both inpatient and outpatient set-
tings at a tertiary pediatric hospital with a high volume of patients
with epilepsy. However, the recruitment of patients was not ran-
domized and there may be an element of selection bias in which
the survey respondents are more interested in mobile applications
than the average patient. The data collected from our surveys may
also be affected by recall bias, though were corroborated by med-
ical chart review. We only surveyed parents and caregivers at a sin-
gle tertiary center, and our population may be skewed to pediatric
patients with a more complex epilepsy history compared to the
general pediatric population with epilepsy.
5. Conclusions
This is one of the first studies to examine the uptake and deter-
minants of SAPs in a Canadian pediatric population with epilepsy.
Our current uptake of 62% highlights the need to increase the per-
centage of patients with SAPs, especially in those at greater risk of
SE. The majority of families would find a SAP mobile application
valuable in the management of their child’s epilepsy. However,
despite high parental interest in mobile applications for epilepsy
management, the use of such apps is low. There are 40 mobile apps
designed for patients with epilepsy currently available in Canada,
but most of them do not display a patient’s individualized SAP.
Acknowledgement
We thank the families who participated in this study.
Funding sources
This research did not receive any specific grant from funding
agencies in the public, commercial, or not-for-profit sectors.
Declaration of competing interests
The authors report no potential conflicts of interest.
5
Epilepsy & Behavior 117 (2021) 107860
Statement of authorship
MBC conceptualized and MC, SP, LH, and MBC designed the
study. SP, CD, MB, and CS acquired the patient data. MC and MBC
performed medical chart review. MC performed a systematic
review of currently available mobile applications. MC, BK, and DS
analyzed the data. MC drafted the manuscript and MBC supervised
all aspects of manuscript development. All authors participated in
the editing of the final manuscript.
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