Feasibility of epilepsy follow up care through telemedicine: A pilot study on parental/caregiver

perspective
Albert Roland G Alcaraz, MD and Maria Antonia Aurora Moral-Valencia, MD

Introduction

Epilepsy is a chronic neurologic disease that affects patients worldwide regardless of sex, race and social

status. The cardinal manifestations of epilepsy are described as recurrent paroxysmal events that

manifest as behavioral changes reflecting the alteration in the brain’s electrical signals. Around 50% of

these cases still have an unknown etiology despite knowledge of other possible mechanisms. The

World Health Organization (WHO) in 2006 reported that an estimated 50 million people had epilepsy for

which 49% are living in low-income and lower-income countries. It showed that the median lifetime

prevalence of epilepsy in low-income countries is around 14 per 1,000 individuals wherein majority of

which are children and young adults living in rural areas. Hence an existence of a treatment gap is seen

wherein patients in these regions lack access to qualified doctors, facilities such as

electroencephalography and neuroimaging difficulty in procuring the medications needed for treatment

and lack of education regarding the illness for the parents/caregivers. (1,2).

A recent study on the global, regional and national burden of epilepsy from 1990-2016 reported that

there were 45.9 million patients with epilepsy which peaks at ages 5-9 years old and mostly male

patients. The burden of the disease was measured using deaths, prevalence and disability-adjusted life

years (DALY) with an over-all decrease in the age standardized mortality rate of 24.8%. However, the

greater severity of epilepsy and higher premature mortality and years of lived with disability was seen in

low-income countries. In this study, the Philippines showed a mean of 819 deaths related to epilepsy in

2016 which is the third most in the southeast Asian region behind Indonesia (3260 deaths) and

Myanmar (955). The prevalence of epilepsy was around 345,441 cases with a -14.7% percentage change
in age standardized rates from 1990-2016. The disability-adjusted life years (DALY) for our country was

at 176,577 with a -3.7% percentage change seen. An inverse association was seen between the burden

of epilepsy and socio-demographic features of a country brought by inequalities in its healthcare system

like in our country. (2) In our country, several challenges in the management of epilepsy exist because

we are live in an archipelago of 7,107 islands that are geographically isolated therefore certain areas

have limited access to health care especially the disadvantaged regions. The average travel time from

the patient’s home to a health care facility is 39 minutes for which a longer time is expected in rural

areas. The expenses from the consult, food, transportation and medications are often out of pocket of

the families with epilepsy. (3) The limited of number of highly trained specialist to handle cases of

epilepsy is also an important factor to consider in our predicament. As of 2018, the Child Neurology of

the Philippines has 95 fellows practicing in 17 regions of the archipelago majority of which are practicing

in Metro Manila.

The cornerstone of treatment in epilepsy is to achieve good control through a guided medication

regimen and proper education through follow ups from their doctor. However, the recent Coronavirus

disease (Covid-19) pandemic made seeking medical appointments and refilling medications more

burdensome for the patient’s and their parents or caregivers. Going to clinics and emergency rooms

could have additional risks as exposure to coronavirus is inevitable in crowded areas. It is therefore

recommended that telemedicine should be introduced to the patient’s family and caregiver to

continuously maintain their doctor’s appointment and acquire prescription to last for months. The use

of telemedicine would allow the doctors to maintain his consultations without the unnecessary

exposure hence preventing the spread of Covid-19. It with utmost importance that proper information

regarding epilepsy will be provided to the parents or caregivers as this help lessen anxiety and stress.
The effect of Covid-19 among patients with epilepsy remains unclear hence telemedicine could bridge

this gap during this pandemic. (4)

Review of Related Literature

There has been a rapid advancement of telemedicine as a concept of remote health care in the 21 st

century including in child neurology. Several improvements in technology through video conferencing

applications and faster hardware paired with high speed internet have provided many opportunities for

patients, hospitals and healthcare systems to share information in managing various neurologic

diseases. The consistency and a high-quality of internet bandwidth and skills required to make

videoconferencing happen between two participants makes it more challenging. (5,6)

Several important terms are needed to distinguish the scope and potential of tele-neurology in clinical

practice. Telehealth is defined as continuation of health care remotely through various means of

telecommunication tools including telephones, smartphones and mobile wireless devices with or

without a video connection. These includes telemedicine, eConsults, store and forward, remote

monitoring and education. Telemedicine is a synchronous or real-time direct patient care with that

happens remotely through the use of audio and video equipment. The location of the provider is called

distant or remote site while the patient’s location at the time of telemedicine consult is the originating

site. The use of regular telephone calls can also be included as telemedicine. Store and forward means

there is an asynchronous or non real-time interpretation of provided data (EEG, ECG, 2D

echocardiography, images from ultrasound, CT Scan even structured developmental examinations) by a

clinician remotely. eConsults are tele-consultations between provider and another individual with or

without the patient; this can be done synchronous or asynchronous as well. Remote monitoring is the

real-time transmission of vital signs or other physiological data such as EEG or intraoperative evoke
potentials to be observed and interpreted by a distant provider. Education telehealth is online

revolution of teaching modules from a provider to a targeted audience; a webinar is the most common

example. (6)

The use of tele-neurology has become an accepted practice in recent years because of access

limitations, in particular those patients who live in the remote or rural areas with difficulty in acquiring

transportation services thus bridging this huge distance and the limited number of neurologist available

for consultation. Several medical institutions made tele-neurology widely acceptable as early 1999

especially for acute stroke since it has a high-risk nature. Tele-stroke has been exemplary in providing a

telemedicine service wherein patients from community hospital now have access to a child neurology

consults. There has been subsequent researches that validates the efficacy, outcomes, safety and cost

savings from this intervention. However, there are still some difficulties that may happen in the practice

of child tele-neurology such as incomplete neurologic physical examination which includes the following:

securing the child’s full attention during the consult, testing for muscle tone, strength, sensory testing,

reflexes and fundoscopic examination. Since the practice of child neurology relies heavily on the

neurologic examination into the diagnosis and treatment, some practitioners of child tele-neurology

prefer to do follow-up consults only for seizures, medication management, post discharge and review of

diagnostic procedures. (6) In a similar study done by Ahmed et. al showed that there is indeed a high

patient rate satisfaction among adult patients with epilepsy and significant reduction in cost (in terms of

transportation, accommodation and missed work) with the use of telemedicine technology. The

videoconferencing ranged from 20 to 30 minutes was successful in providing counseling, clinical

discussion however the actual neurological examination is only limited to that of inspection. It is a great

help to those who live the farthest from an available specialist. (7)
The use of telemedicine has been also beneficial in patients with developmental disability using the

asynchronous method. Many children find transitions to traditional healthcare environment challenging

thus leading to more anxiety, fear and disruptive behavior. The lengthy travel time to specialist’s clinic

especially if the travelling from a rural area and waiting in line exacerbates this behavior. In a study by

Langkamp, McManus and Blakemore in 2015 showed that the use of asynchronous telemedicine among

children with developmental disability has several benefits such as a high level of parental satisfaction,

decreased stress for the child thus leading to successful examination, reducing travel cost and reduced

time lost from work. (8)

The health seeking behaviors of patients are deeply influenced by their culture. Health care workers

should be made aware of these biases while being respectful of their patient’s personal beliefs. In a

study by Bonuel in 2017 showed Filipino elders living in the United States still use herbal medications

like boiled guava leaves among other home remedies for simple ailments, believed that unexplained

phenomenon where attributed to the supernatural and they would initially consult friends and family for

mild symptoms. They would only seek medical attention from a medical doctor based on the severity of

symptoms wherein they can disclose their medical information on a face to face basis. (9)

The use of telemedicine in providing access to specialists for our disadvantaged communities has been

available since 2004 because of the partnership of the National Telehealth Center (NHTC) and

Department of Health Doctor to the barrios program (DTTB). Telereferrals are facilitated through the

use of the internet technology and mobile phones. A highly successful project called RxBox was built as

telemedicine prototype device prototype which now caters to around 6.6 million people through 459

municipal health officers. The mission of NHTC is to engage several communities in the design,

development and the use of appropriate and progressive information and communications technology

(ICT) towards better equity in health. (10)

The recent Covid-19 pandemic greatly affected the lives of the Filipinos eversince started it on January

30, 2020 when the first case of Covid-19 in the country was detected from a 38 year old Chinese woman

from Wuhan. The first local transmission was later confirmed on March 7, 2020 from a 48 year old

Filipino man who recently traveled to Japan. The Philippine government initially placed the country in an

enhanced community quarantine during the second week of March 2020 hence there is limited

movement of people, goods and public transportation. There is still an increasing trend in the number of

detected cases and as of June 2, 2020, there are 18,997 confirmed cases. (11, 12) This will be a great

opportunity to utilize telemedicine because it would allow parents or caregivers to continue to maintain

their consults to their respective doctors without the additional risk of acquiring the disease.

General obectives

To provide knowledge on the use of telemedicine for follow-up care of epilepsy in children.

Specific objectives

To investigate the feasibility, acceptability, cost-savings and convenience of follow-up care to patient’s

parents or caregiver using a telemedicine mode of delivery.

Methodology

1. Study design

This is a descriptive cross sectional study using a survey.

2. Study setting and duration

The parents or caregivers of epilepsy patients that experienced telemedicine consult that will be

participating in the study would be recruited by their respective child neurologist. They will be

asked to fill out a consent form prior to answering the survey in accordance to the Data Privacy
 Act of 2012. No personal and sensitive information will be released in the study. Once

completed, this be submitted via a dedicated email wherein the primary investigator and the

co-investigator are the only ones with access. They will be receiving a link of a Google document

that will answer by picking the best answer that applies to them. This will be in English with a

total of number of 26 questions. The first part of the questionnaire would ask information about

the parent or caregiver’s information including their age, sex, educational attainment and to

which region of the country they reside. Several questions regarding to the patient’s epilepsy

like age of onset, present age, sex and number of medications that the patient is presently

taking would be asked as well. The second part of the questionnaire would consist of questions

pertaining to the traditional method of consultation pertaining to the mode of transportation

and the expenses (transportation and lodging) that the parent or caregiver paid during that

time. The next set of questions would be regarding the telemedicine consult of the parent or

caregiver such as the gadget (smart phone, tablet or computer), mode of communication

(call/text, email or videoconferencing), platform/program (Zoom, Facebook messenger,

Whatsupp/Viber/WeChat, Google Meet and others) and difficulties that they encountered

during the session. The third part of the questionnaire would include 12 questions with a five

-point Likert type scale from “strongly disagree” to “strongly agree” to gather information about

the parent or caregiver’s overall experience, satisfaction and other concerns with the

telemedicine consult. Once approved by the Ethics review committee, the study will run for a

year from September 2020 to September 2021.

3. Sample size

This will include at least 100 patients by convenience sampling method.

4. Study Population
 The study will include parents or caregivers of children diagnosed with epilepsy who recently

had a follow-up telehealth consult from a child neurologist. The telehealth consult may consist

of call/text message, message via several apps, e-mail or video conferencing. Patients that are

included in the study are those aged from 0 to 18 years old and with adequate medical history

and neurologic examination on file of their child neurologist. Excluded in this study are those

with other co-morbidities like cardiac and respiratory disorders especially related to Covid-19.

5. Plan of Analysis

There will be a descriptive analysis of the clinical profile of the patient to include age of onset of

seizures, present age, sex and number of medications taken. Statistical analysis will be

conducted using SPSS Statistics Version 24 (IBM Corporation, Armonk, New York, USA) and

Microsoft Office Excel Version 2013 (Microsoft Corporation, Redmond, Washington, USA).

Frequencies will be reported as numbers and percentages, and continuous data as mean and

median. We will perform chi-square tests and considered a p-value of <0.05 to indicate

significance.

References

1. Newton, Charles and Garcia, Hector. Epilepsy in poor regions of the world. The Lancet Neurology
(2012).
Doi: 10.1016/s0140-6736(12)61381-6

2. Beghi, Ettore. Global, regional and national burden of epilepsy, 1990-2016: a systemic analysis for the
Global Burden of Disease Study. The Lancet Neurology (2019). Doi: 10.1016/s1474-4422(18)30454-x

3. Patdu, Ivy and Tenorio, Allen. Establishing the legal framework of telehealth in the Philippines. Acta
Medica Philippina (2016)

4. Kuroda, Naoto. Epilepsy and COVID-19: Associations and important considerations. Epilepsy and
Behavior (2020). Doi: 10.1016/j.yebeh.2020..107122
5. Bahrani K, Singh MB, Bhatia R, Prasad K, Vibha D, Shula G, Vishnubhatla S, Patterson V. Telephonic
review of outpatients with epilepsy – A prospective randomized, parallel group study. British Epilepsy
Association Journal (2017). Doi: /10.1016/j.seizure.2017.11.003

6. Lo, Mark and Gospe, Sidney Jr. Telemedicine and Child neurology. Journal of Child Neurology (2018)
Doi: 10.1177/0883073818807516

7. Ahmed SN, Mann C, Sinclair DB, Heino A, Iskiw B, Quigley D, Ohinmaa A. Feasibility of epilepsy follow-
up care through telemedicine: A pilot study on the patient’s perspective. Epilepsia (2008) Doi:
10.1111/j.1528-1167.2007.01464.x

8. Langkamp DL, McManus MD and Blakemore SD. Telemedicine for children with developmental
disabilities: A more effective clinical process than office-based care. Telemedicine and e-Health Journal
(2015). Doi: 10.1089/tmj.2013.0379

9. Bonuel Nena. Perception of health and health care practices by five Filipino elders. Journal of Nursing
Education and Practice (2017). Doi: 10.5430/jnep.v8n5p68

10. The National Teleheath Center. Manila, Philippines (Internet). (cited June 3 2020) Available from:
http://nih.upm.edu.ph/institute/national-telehealth-center

11. World Health Organization. Manila, Philippines (Internet). (cited June 3, 2020) Available from:
https://www.who.int/philippines/emergencies/covid-19-in-the-philippines

12. Departemnt of Health Covid19 Response Page. Manila, Philippines (Internet). (cited June 3, 2020)
Available from: https://www.covid19.gov.ph
Appendix 1.
Telehealth Questionnaire
Part 1

Date:

A. Personal Information
Name (optional):
Relationship to patient:
o Parent
o Caregiver. Please specify: _____________________

Age: Sex:
Location:

o Region 1
o Region 2
o Cordillera Administrative Region
o Region 3
o National Capital Region
o Region 4-A
o Region 4-B
o Region 5
o Region 6
o Region 7
o Region 8
o Region 9
o Region 10
o Region 11
 o Region 12
o Autonomous Region of Muslim Mindanao

Educational attainment:
o Post graduate studies
o College graduate
o College undergraduate
o Highschool graduate
o Highschool undergraduate
o Elementary graduate

B. Information about the epilepsy patient

Age of onset of seziures:

o Less than 1 year old
o 1 to 4 years old
o 5 to 9 years old
o 10 to 14 years old
o 15 to 18 years old

Present age:
o Less than 1 year old
o 1 to 4 years old
o 5 to 9 years old
o 10 to 14 years old
o 15 to 18 years old

Sex:
o Male
o Female

Number of anti-epileptic drugs

o One
o Two
o Three or more
Appendix 2

Telehealth Questionnaire
Part 2

Date:

A. Please answer only what applies to your traditional visit to your child neurologist.

1. As the patient’s parent or caregiver, what is your employment status?

o in paid work (full or part time)
o looking for work (unemployed)
o looking after the home as a homemaker
o retired
o student
o others

2. When you travel to your doctor’s clinic for epilepsy follow up care, what is your mode of
transportation?
o by walking
o by private car/ motorcycle
o by taxi/ Grab/ Angkas
o by jeepney/bus
o by ambulance/ barangay mobile
3. How much do you spend in total if you visit the respective clinic of your provider? Amount in
Php______________

4. Do you take someone with you to help you when you bring the patient for consult ?
o Yes (Continue to question number 5)
o No (Continue to question number 8)

5. If you take someone with you during your consult to the clinic, is he or she a?
o health care professional (doctor/nurse/physical therapist/midwife/social worker)
o relative or friend

6. If you bring your child or patient to visit the clinic, do you need to be absent from work?
o Yes. How many hours? _______ hours
o No

7. Do you need to stay overnight in a hotel/motel or nearby relative prior to your visit to the clinic?
o Yes. How many nights? ________ nights
o No

B. Please answer only what applies to your telemedicine consult.

8. What gadget do you use when you do telemedicine consult?

o Computer (Desktop or laptop)
o Smartphone (IOS or Android based mobile phones)
o Tablets (Ipad or other tablets)

9. What method of communication are you most comfortable using during a telemedicine session?
o by call or text
o by e-mail
o by videocall/ video conferencing (Continue to number 11)

10. What used for platform are you most comfortable using during a telemedicine session?
o Zoom
o Facebook messenger
o Viber/ Whatsapp/ WeChat
o Google Meet
o Others, please specify

11. How much do you spend in total if you do telemedicine in a month? Amount in Php______________
o Prepaid network (Globe, Smart, Sun)
o Postpaid network or any internet service provider

12. Do you take someone with you to help you when you bring the patient for telemedicine/ video
conferencing?
o Yes (Continue to question number 14)
 o No (Continue to question number 15)

13. If you take someone with you during your telemedicine/ video conferencing, is he or she a?
o health care professional (doctor/nurse/physical therapist/midwife/social worker)
o relative or friend

14. If you bring your child or patient to the telemedicine/ videoconferencing, do you need to be absent
from work?
o Yes. How many hours? _______ hours
o No

15. What difficulties did you encounter during your telemedicine/ video conferencing with your doctor?
o Poor internet connection
o Less conducive environment for consultation
o Others. Please specify: ____________________

16. How would you like your next clinic visit arranged?
o Telemedicine/ Videoconferencing
o Face to face visit with your doctor
o Not applicable

Appendix 3.
Telehealth Questionnaire
Part 3

Please take a few minutes to complete this survey. Your responses will help us evaluate your
telemedicine service. Clearly indicate which response best represents your opinion for each question.

Section 1. Overall assessment of the telemedicine session:

Question Strongly Disagree Neutral Agree Strongly

Disagree Agree
1. I was satisfied with O O O O O
the session.
2. I was able to talk O O O O O
about the same
information I would
have in person.
3. I felt the doctor O O O O O
listened to me.
4. There was enough O O O O O
time to deal with
everything that
needed to be covered.
5. Telemedicine made O O O O O
it easier for me to
access health care
services and I felt less
stressful.
6. A telehealth visit O O O O O
saves me money
compared to a normal
visit.
7. I find telehealth an O O O O O
acceptable way to
receive healthcare
services.
8. I prefer a telehealth O O O O O
visit than a face to face
visit to my doctor.
9. The telehealth visit O O O O O
allowed me to visit my
physician sooner than
a physical visit to the
clinic.
10. During my O O O O O
appointment, I was
worried that others
might be listening or
watching.

11. There has been a O O O O O

good control of
seizures through my
prompt follow-up.
12. Overall, I am O O O O O
satisfied with the
quality of service being
provided via
telehealth.
Appendix 4.
Research time frame

Task June to August September to December September to

2020 November 2020 to December

2020 September 2021

2021
Development of X

research ideas
Writing the research X

protocol
Application for X

ethical approval
Final research X

protocol
Data collection X
Data analysis and X
interpretation
Research writing X
Budget proposal

Item Amount Total

Statistician 5,000 5,000
Paper/Printing 5,000 5,000
Grand Total 10,000
The budget will be shouldered by the primary investigator