CRITICAL REVIEW AND INVITED COMMENTARY

Epilepsy: Transition from pediatric to adult care.

Recommendations of the Ontario epilepsy implementation
task force
1*
Danielle M. Andrade, 2Anne S. Bassett, 3Eduard Bercovici, 4Felippe Borlot, 3Esther Bui, 5†Peter
Camfield, 6Guida Quaglia Clozza, 7Eyal Cohen, 8Timothy Gofine, 9Lisa Graves, 10Jon Greenaway,
11†
Beverly Guttman, 12Maya Guttman-Slater, 13Ayman Hassan, 14Megan Henze, 15Miriam
Kaufman, 16Bernard Lawless, 17Hannah Lee, 18Lezlee Lindzon, 19Lysa Boiss
e Lomax, 20Mary Pat
21 22,23
McAndrews, Dolly Menna-Dack, Berge A. Minassian, Janice Mulligan, 24Rima Nabbout,
14
25
Tracy Nejm, 26Mary Secco, 27Laurene Sellers, 28Michelle Shapiro, 29Marie Slegr, 30Rosie Smith,
31†
Peter Szatmari, 32Leeping Tao, 33Anastasia Vogt, 34Sharon Whiting, and 35O. Carter Snead III

Epilepsia, 58(9):1502–1517, 2017

doi: 10.1111/epi.13832

Danielle M. Andrade
is an adult
epileptologist and
Chair of the Transition
Guidelines Working
Group.
SUMMARY
The transition from a pediatric to adult health care system is challenging for many
youths with epilepsy and their families. Recently, the Ministry of Health and Long-
Term Care of the Province of Ontario, Canada, created a transition working group
(TWG) to develop recommendations for the transition process for patients with epi-
lepsy in the Province of Ontario. Herein we present an executive summary of this
work. The TWG was composed of a multidisciplinary group of pediatric and adult
epileptologists, psychiatrists, and family doctors from academia and from the commu-
nity; neurologists from the community; nurses and social workers from pediatric and
adult epilepsy programs; adolescent medicine physician specialists; a team of physi-
cians, nurses, and social workers dedicated to patients with complex care needs; a law-
yer; an occupational therapist; representatives from community epilepsy agencies;
patients with epilepsy; parents of patients with epilepsy and severe intellectual disabil-
ity; and project managers. Three main areas were addressed: (1) Diagnosis and Man-
agement of Seizures; 2) Mental Health and Psychosocial Needs; and 3) Financial,
Community, and Legal Supports. Although there are no systematic studies on the out-
comes of transition programs, the impressions of the TWG are as follows. Teenagers
at risk of poor transition should be identified early. The care coordination between
pediatric and adult neurologists and other specialists should begin before the actual
transfer. The transition period is the ideal time to rethink the diagnosis and repeat
diagnostic testing where indicated (particularly genetic testing, which now can
uncover more etiologies than when patients were initially evaluated many years ago).
Some screening tests should be repeated after the move to the adult system. The
seven steps proposed herein may facilitate transition, thereby promoting uninter-
rupted and adequate care for youth with epilepsy leaving the pediatric system.
KEY WORDS: Epilepsy, Transition, Teenager, Youth, Genetics, Discharge package,
Transition readiness questionnaire.

Epilepsy is one of the most common chronic neurologic
diseases in childhood. Seizures remit in about 50% of
patients during childhood. The remainder will become
adults living with epilepsy who, require transfer, or ideally
transition, to an adult health care provider (HCP) for their
epilepsy care.1–5 Often, “transfer” of care is simply “hand-
ing over” a patient to an adult HCP. Alternatively, “transi-
tion” of care is the planned, coordinated movement of
adolescents from the child-oriented, family centered envi-
ronment of pediatrics to the adult-oriented care setting.6

1502
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Epilepsy Transition

Without thoughtful transition or a well-planned transfer,
there is increased risk of interruption in the treatment7 and
worsening of symptoms.
Epilepsy is a complex disease and seizures are only a
part of the problem. The psychosocial outcome of adult
patients with pediatric-onset epilepsy is disappointing.
Adults with childhood epilepsy have a high risk of
social isolation, unplanned pregnancy outside a stable
relationship, behavioral and psychiatric problems, lower
education, and increased financial dependency (even
after controlling for parental educational levels). Poor
psychosocial outcomes are observed even when seizures
remit.1–5,8–16
It is unclear whether standardized programs for transition
Key Points
• The transition process to adult health care system
should start early and doesn’t end when the teenager
leaves the pediatric system
• Transition period is the ideal time to re-think diagnosis
and management
• Psychosocial screening should be done before and
after teens leave the pediatric system
• Negative genetic investigations done long ago, before
next generation sequencing was available, should be
redone with current technology
from pediatric to an adult health care system (AHCS) can
change these outcomes; however, well-designed, multidis-
ciplinary transition programs should address not only
seizure control but also psychosocial problems that are so
often comorbid with epilepsy.
Transition from pediatric to AHCS proves difficult
for many youths with epilepsy and their families. There
are significant difficulties in establishing and maintain-
ing transition programs in epilepsy. For instance, it is
difficult to coordinate schedules and bring together
HCPs from pediatric and adult programs who usually
work independently in different locations. Finding space
for transition clinics may also be challenging. Some
billing systems do not allow payment for pediatric and
adult neurologists to see the same patient, and multidis-
ciplinary programs require extra funding for special ser-
vices and coordinators.
Recently, the Ministry of Health and Long Term Care
(MOHLTC) of the Province of Ontario, Canada, developed
a model for comprehensive epilepsy care in Ontario (popu-
lation ~14 million). Part of this mandate was to create guide-
lines for transition from pediatric to the AHCS. Herein we
present an executive summary of these guidelines.
How to Improve the Exit from
the Pediatric, and Entry into the
Adult Health Care System
As part of a large program to improve epilepsy care in
Ontario, the MOHLTC created a Provincial Epilepsy
Implementation Task Force (EITF), which was tasked
with operationalizing a Provincial Epilepsy Strategy for
Ontario and the development of several guidelines,

Accepted May 30, 2017; Early View publication July 6, 2017.

1
Division of Neurology, Epilepsy Transition Program and Epilepsy Genetics Program, University of Toronto, Toronto Western Hospital, Toronto,
Ontario, Canada; 2Centre for Addiction and Mental Health, University of Toronto, Toronto, Ontario, Canada; 3Division of Neurology, University of
Toronto, Toronto Western Hospital, Toronto, Ontario, Canada; 4Department of Neurology, Clinical Neurosciences Center University of Utah School of
Medicine, Salt Lake City, Utah, U.S.A.; 5Division of Pediatric Neurology, Dalhousie University, Halifax, Nova Scotia, Canada; 6Parent Representative,
Toronto, Ontario, Canada; 7Division of Pediatric Medicine, University of Toronto, The Hospital for Sick Children, Toronto, Ontario, Canada; 8Ontario
Shores, Whitby, Ontario, Canada; 9Family Physician, Sudbury, Ontario, Canada; 10Erin Oak Kids, Centre for Treatment and Development, Toronto,
Ontario, Canada; 11Provincial Council for Maternal and Child Health, Toronto, Ontario, Canada; 12Patient Representative, Toronto, Ontario,
Canada; 13Thunder Bay Regional Health Sciences Centre, Thunder Bay, Ontario, Canada; 14Hospital for Sick Children, Toronto, Ontario,
Canada; 15Division of Adolescent Medicine, Department of Pediatrics, University of Toronto, The Hospital for Sick Children, Toronto, Ontario,
Canada; 16St. Michael’s Hospital, Toronto, Ontario, Canada; 17Holland Bloorview Kids Rehabilitation Hospital, Toronto, Ontario, Canada; 18Epilepsy
Program, Toronto Western Hospital, Toronto, Ontario, Canada; 19Division of Neurology, Queens University, Kingston General Hospital, Kingston,
Ontario, Canada; 20Division of Neuropsychology, University of Toronto, Toronto Western Hospital, Toronto, Ontario, Canada; 21LIFEspan Service,
Holland Bloorview Kids Rehabilitation Hospital, Toronto, Ontario, Canada; 22Pediatric Epileptologist, Division of Pediatric Neurology, University of
Toronto, The Hospital for Sick Children, Toronto, Ontario, Canada; 23Pediatric Neurology, University of Texas Southwestern and Dallas Children's
Medical Center, Dallas, Texas, U.S.A.; 24Pediatric Neurologist, Centre of Reference Epilepsies Rares, Hospital Necker-Enfants Malades, Paris,
France; 25Parent Representative, London, Ontario, Canada; 26Strategic Initiatives, Epilepsy Support Centre, London, Ontario, Canada; 27Family
Physician, Toronto, Ontario, Canada; 28Division of Neurology, McMaster University, Hamilton Health Sciences Centre, Hamilton, Ontario,
Canada; 29Neurologist, Toronto, Ontario, Canada; 30Adult Services, Epilepsy Toronto, Toronto, Ontario, Canada; 31Child and Youth Mental Health
Collaborative, Centre for Addiction and Mental Health, Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada; 32Surrey Place
Centre, Toronto, Ontario, Canada; 33Critical Care Services, Toronto, Ontario, Canada; 34Division of Pediatric Neurology, University of Ottawa,
Children's Hospital of Eastern Ontario, Ottawa, Ontario, Canada; and 35Division of Pediatric Neurology, University of Toronto, The Hospital for Sick
Children, Toronto, Ontario, Canada
Address correspondence to Danielle M. Andrade, MD, MSc, FRCPC, Division of Neurology, Epilepsy Genetics Program, University of Toronto,
Toronto Western Hospital, 5WW-445, 399 Bathurst Street, M5T2S8 Toronto, ON, Canada. E-mail: danielle.andrade@uhn.ca
*Chair of transition working group.
†
Members of advisory committee of transition working group.
Wiley Periodicals, Inc.
© 2017 International League Against Epilepsy

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doi: 10.1111/epi.13832
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D. M. Andrade et al.
including one on transitioning of young people with epi-
lepsy in Ontario from pediatric to adult care. With sup-
port from Critical Care Services Ontario and the
Provincial Neurosurgery Advisory Committee, the EITF
created a transition working group (TWG). The TWG
included pediatric and adult epileptologists, psychiatrists,
and family doctors from academia and from the commu-
nity; neurologists from the community; nurses and social
workers from pediatric and adult epilepsy programs; ado-
lescent medicine physician specialists; a team of physi-
cians, nurses, and social workers dedicated to patients
with complex care needs; a lawyer; an occupational ther-
apist; representatives from community epilepsy agencies;
patients with epilepsy; parents of patients with epilepsy
and severe intellectual disability; and project managers.
The TWG used as a framework previously published rec-
ommendations from the American Academy of Pedi-
atrics,6,17 the American Epilepsy Society,18,19 and The
Provincial (Ontario) Council for Maternal and Child
Health.20 In addition, several publications outlining the
principles of transition for patients with a variety of
chronic pediatric diseases6,17,21–25 or specifically for
patients with epilepsy26–32 were reviewed. Most of these
papers correctly emphasize the need for multidisciplinary
transition clinics.
The TWG had 24 teleconferences, and the final docu-
ment was produced after several iterations over 2 years.
The following committees were created: (1) Diagnosis
and Management of Seizures; (2) Mental Health and
Psychosocial Needs; (3) Financial, Community and
Legal Supports; and (4) Screening tools. An extensive
Figure 1.
Epilepsy transition schedule. This schedule is set for patients who leave the pediatric system at 18 years of age, but can be adapted accord-
ing to practice/geographical locations. *The Pediatric Discharge Package should be shared with the new adult health care team, the family
doctor, other specialists involved, and the patient and his/her family. This package contains transition readiness questionnaires, screening
for psychosocial problems, epilepsy history form, seizure emergency plan, goals of care, referrals to community, and social and financial
support documentation.
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doi: 10.1111/epi.13832
review of publications between 1995 and 2016 was
based on PubMed searches by each committee. This
was supplemented by a review of the websites of school
boards and agencies providing care for patients with
epilepsy plus intellectual disability. Direct contact with
employees of these agencies confirmed the information
about financial, social, and legal support for people with
epilepsy. Herein we present an executive summary of
this extensive document that emphasizes seven steps for
transition (Fig. 1). The complete document is available
at https://www.criticalcareontario.ca/EN/Epilepsy%
20Guideline%20Series/Provincial%20Guidelines%20for%
20Transitional%20Care%20of%20Paediatric%20Epilepsy
%20Programs%20to%20Adult.pdf.
The most significant additions to previously published
material about transition in epilepsy care presented in
this document are the following: (1) the use of a portable
document containing the individualized epilepsy informa-
tion (“my health passport”); (2) repeated psychosocial
screening recommendations after the patient moves to
the adult system; (3) the emphasis on reevaluating
genetic diagnosis based on current genetic technology;
and (4) easy to use, single-page handouts of social ser-
vices available in Ontario.
When to Start; What to Do
Transition should start early and should be tailored to the
level of disability. For the purposes of transition, patients
with epilepsy can be broadly divided into those with “epi-
lepsy and normal intelligence or only mild learning

disability” (E+NI) and those with “epilepsy and moderate to
severe intellectual disability” (E+ID). Both groups of
patients may have significant comorbidities.
We recognize that one professional only might not have
time to complete all the necessary steps for transition.
Except for step 5, the responsibility for completing the steps
may be shared by the other members of transition care team:
pediatric nurse, social worker, and community epilepsy
agency staff. Community epilepsy agencies may provide
self-management strategies and epilepsy education related
to unwanted pregnancy, driving regulations, and sudden
unexpected death in epilepsy (SUDEP). The primary care
provider (PCP) should also be involved in transition. With
coordination, most of the steps can be completed during rou-
tine visits. The Child Neurology Foundation has recently
endorsed a position paper about the role and responsibilities
of pediatric neurologists in transition for children and youth
with neurologic disorders. This statement has been endorsed
by the American Academy of Neurology, the Child Neurol-
ogy Society, and the American Academy of Pediatrics.25
Some of their recommendations are mirrored in seven steps
listed below.
Step 1(Ages 12–15 years):
Introduce the Concept of
Transition
The “Shared Management Model of Transition” empha-
sizes a gradual shift in responsibilities from the HCP to the
parent, and then ultimately to the adolescent as develop-
mentally appropriate33–35 (Fig. 2). The roles of children
change over time. For epilepsy patients, this means that if/
when seizures or status epilepticus causes delays or regres-
sion of abilities, the patients may move backwards in their
abilities and self-management. However, when new skills
Figure 2.
The Shared Management Model**. Available at http://www.sickkid
s.ca/Good2Go/the-shared-management-model/index.html
**Modified from Kieckhefer GM., & Trahms CM. Supporting
development of children with chronic conditions: From compli-
ance toward shared management. Pediatric Nursing 2000;26
(4):354-363.
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Epilepsy Transition
are learned, self-management advances. Patients with E+ID
may not reach the maximum level of The Shared Manage-
ment Model of Transition, but may be able to participate in
their own care and decision-making at a higher level than
parents and HCPs had anticipated.
Step 2 (Ages 12–17 years):
Explore Financial, Community,
and Legal Support Available
Early planning is important to minimize the gaps in
funding and services after the patient leaves the pediatric
system. This is especially important in the following
areas: housing, education, employment, legal issues,
health insurance, respite care, and services offered to peo-
ple with disabilities. Early understanding of how to access
adult services can allow families to gather the required
eligibility documentation, with/without the assistance of
HCPs and educators. For instance, the application process
to receive services/funds from Development Services
Ontario (an agency that supports adults with disabilities)
may take 2 years. Given that pediatric care ends at age 18
in Ontario, this application process should start at
16 years to avoid interruptions. It is also important to doc-
ument legal guardianship before age 18 for those patients
with E+ID. Other jurisdictions have differing services,
therefore similar comprehensive lists of resources (and
timelines for access) may be developed in other regions
and systematically updated over time.
Step 3 (Ages 16–17 years):
Determine Transition Readiness
of Patients and their Parents
Physical and psychological preparedness is of paramount
importance for proper transition.36–39 “Readiness check-
lists” help evaluate and improve patients’ understanding of
their health condition, thereby facilitating the transition pro-
cess (Table 1).38,39 There are no “pass/fail” scores—check-
lists can identify areas that the pediatric health care team
can use to guide patients and families to a more successful
transition.
As part of the transition readiness, adolescents or care-
givers may receive a portable health summary,40,41 which
can be obtained through web-based tools completed by the
patient and a health care worker. Such tools are available at
several academic institutions. At The Hospital for Sick Chil-
dren, Toronto, Canada, this summary can be printed in the
form of a customized wallet-size card called “MyHealth
Passport.” This card provides an instant reference to rele-
vant medical information and should be used whenever the
adolescent visits a new doctor or the emergency department.
These portable health summaries increase patients’ knowl-
edge of their condition, improve their self-efficacy, and
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Table 1. Epilepsy transition readiness checklist.

For each of the following statements please select the response that No, I do No, but I am Yes, I have Yes, I always Does not
best suits you not know learning to do this started doing this do this apply to me
For teenager
I can describe my health condition and explain my health care
needs to others
I know what triggers my seizures and how to minimize the
triggers
I know what to do in the event of a medical emergency relating to
my condition (first aid; when to call 911)
I know how to call the doctor about unusual changes in my health
(for example: medication side effects)
I know the names of the medications I take
I know how to take medications correctly on my own and have a
system in place to remind me when to take them
I know when and how to reorder medications before they run
out
I have had a discussion about how certain medications can impact
birth control and pregnancy
I can call my doctor’s office to make or change an appointment
I make a list of questions to ask my doctor before going to
appointments
I organize and keep track of my health information
(appointments, medications, seizures, etc.)
I can get to medical appointments on my own
I spend time alone with my health care provider at each
appointment
I speak up for myself and tell others what I need during health care
visits
I have discussed sexuality and reproductive health with my
health care team (consent/sexually transmitted infections/
contraception)
I know how my lifestyle can impact my health condition and how
to discuss this with my health care team (e.g., use of alcohol,
drugs, lack of sleep, etc.)
I understand the rules and regulations about epilepsy and driving
I understand the implications of my heath condition on career
choice and future employment
I know my legal rights as a person living with this health condition
and how to access necessary accommodations at school and at
work
I know about my health insurance coverage. If on parents’ plan
currently, I know the plan for coverage when my parent(s)
health insurance runs out
I know about my right to privacy, confidentiality, and decision-
making regarding my health.
If I chose to, I know how to disclose my epilepsy to friends,
classmates, coworkers, and others
I know how to access the supports I need if I feel stressed,
depressed, or anxious
I know what to expect in adult services and how it differs from
pediatric services
For each of the following statements please No, my child No, but my child Yes, my child has Yes, my child Does not apply
select the response that best suits you does not know this is learning to do this started doing this always does this to my child
For parents or caregivers
My child has an understanding of his or her
health condition and how it is being
managed (type of seizures, when a seizure
is a medical emergency, first aid,
treatment, etc.)
Continued

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Epilepsy Transition

Table 1. Continued.
For each of the following statements please No, my child No, but my child Yes, my child has Yes, my child Does not apply
select the response that best suits you does not know this is learning to do this started doing this always does this to my child
My child can describe his or her health
condition to others (physician/emergency
personnel, school, employer, etc.)
My child takes part in health care
discussions about him or herself
My child organizes and keeps track of his/
her own health information
(appointments, medications, seizures,
test results)
My child knows how to get him/herself to
health care appointments
My child talks to health care providers
about how his/her health condition is
affecting his/her life
My child has a plan in place for when he
feels stressed, depressed, or anxious.
My child knows what his/her health
condition can bring in the future (e.g.
prognosis, marriage, children)
My child knows about his/her medical
insurance. If on parents’ plan currently,
there is a plan for coverage when my
health insurance runs out
My child speaks up for him/herself and
spends some time alone with health care
provider at each visit (when necessary)
My child talks to health care providers
about how his/her condition is affected by
tobacco, alcohol, and other drugs
My child talks to health care providers
about sexual and reproductive health
issues (contraception, sexually
transmitted infections, consent)
My child has a network of friends, family,
or other community supports that can
support him/her in times of stress
My child is aware of careers that may not
be suitable for a person living with
epilepsy
My child is aware of the regulations around
driving and epilepsy
My child is aware of his human rights as a
person living with a disability (school,
community, employment, etc.)
For each of the following statements please select the response No, I do I know I know I know all Does
that best suits you not know some of this most of this about this not apply
As a parent
I understand my child’s right to confidentiality and the right to
informed consent
I am aware of community resources that can assist me with
the transition process
I am working with my child on a transition plan
I have a plan for the future housing needs of my child
I have knowledge of disability supports for my child
I have knowledge of funding sources for my child’s needs
I have knowledge of information relating to estate planning
I have confidence in teaching my child self-advocacy skills
I speak with my child about career life planning and how his/
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D. M. Andrade et al.
enhance collaboration between the pediatric and adult
systems.42
Step 4A (Ages 12–19 years):
Identify and Address Risk
Factors for Unsuccessful
Transition in Adolescents with
Epilepsy and Normal
Intelligence
Adolescents living with epilepsy are not only susceptible
to issues inherent to their age, but also problems such as psy-
chiatric disturbances, lower level of education, underem-
ployment, and unemployment.4,10,43–45 These factors need
to be addressed because they likely increase the risk of
unsatisfactory transfer to the AHCS and may impact their
adult lives.46 Some of the issues are the following.
Inconsistent medication compliance
Asato and colleagues noted that although most adoles-
cents are confident that they have adequate knowledge
about how to take their medication as prescribed, 35–55%
of them report nonadherence. The main reasons are forget-
fulness, not having the medication on hand, side effects, and
“social issues.”47
Risk of unwanted pregnancy
Young women with a history of either active or inactive
epilepsy have an increased risk of unplanned pregnancy
than both young women with a past history of juvenile
rheumatoid arthritis and healthy young women.9,10,14,48–50
The American Academy of Neurology recommends that as
soon as a young woman with epilepsy reaches childbearing
years, contraception, family planning, interactions of
antiepileptic drugs (AEDs) with hormonal contraceptives,
folic acid supplementation (at least 0.4 mg/d), and terato-
genicity of AEDs, should be discussed.51,52
Driving and seizures
A driver’s license is a marker of independence and may
be a necessity for certain jobs. Seizure control and associ-
ated comorbidities can affect driving eligibility. The rules
for reporting seizures and regaining driving permits vary
Table 2. Psychosocial screening tools for patients with E+NI.
For adolescents with epilepsy and normal intelligence
GAIN-SS (Global Appraisal of Individual Needs – Short
Screener) plus MFQ (Mood and Feelings
Questionnaire)
HEEADSSS 3 (which is adapted for latest technologies
such as cell phone and social media)
HEEADSSS 3, Home environment, Education and employment, Eating, peer-related Activities, Drugs, Sexuality, Suicide/depression, and Safety from injury and
violence.
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from place to place and should be reviewed with the patient.
Ensuring treatment compliance is extremely important for
patients who are driving. Discussion of driving regulations
is necessary and should be undertaken, even though it may
be time consuming for the HCP.53
Depression, anxiety, and other psychiatric disorders
Adolescents with epilepsy may be anxious, dependent,
socially isolated, and have low self-esteem.54 The rates of
depression and anxiety in patients with E+NI are higher than
in age-matched normal controls or patients with type 1 dia-
betes.43,55,56 Mood changes may also be the result of AED
side effects. Other psychiatric diseases such as schizophre-
nia and bipolar disorder also have their onset in teenage
years; however, very few children with epilepsy are
screened, diagnosed, and treated for psychiatric comorbid-
ities.55
Given that this constellation of psychosocial disorders
may not appear initially or might be overshadowed by fre-
quent seizures, it is recommended that patients with epi-
lepsy be screened for psychosocial problems at least three
times during the transition period: (1) early adolescence
(12–14 years); (2) about one year before transfer; (3) and
within one year of transfer to the adult care setting.
The screening tools recommended by the TWG to evalu-
ate psychosocial issues in E+NI patients were chosen based
on the following criteria: (1) the capacity to screen for com-
mon psychosocial disorders in this age group; (2) being in
the public domain; and (3) having good reliability, sensitiv-
ity, and specificity (Table 2).
Step 4 B (Ages 12–19 Years):
Identify and Address Risk
Factors for Unsuccessful
Transition in Adolescents with
Epilepsy and Intellectual
Disability
Suboptimal engagement for electroencephalography,
imaging, blood work, and other diagnostic tests
Allied health care personnel in most adult hospitals are
not familiar with, or trained to work with, patients who are
unable to cooperate with testing.57 This may pose a
For adolescents with epilepsy and mild intellectual
disability
Emotional Problem Scale (EPS) self-report inventory and
EPS Behavior Rating Scale
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Epilepsy Transition

challenge to adults with pediatric-onset E+ID,58 leading to
frustration on the part of caregivers, with resultant subopti-
mal medical management.
Pediatric-onset epilepsy syndromes unfamiliar to the
adult neurologist
Neurologists who provide care to adults with epilepsy
may lack the necessary knowledge to manage some pedi-
atric epilepsy syndromes, making transition troublesome.24
According to Borlot et al., adult neurologists (not trained
epileptologists) have very low comfort levels diagnosing
and treating epilepsy due to malformations of cortical devel-
opment, epileptic encephalopathies, and epilepsy in associa-
tion with genetic syndromes (33.8%, 11.2%, and 9.8%
respectively, felt confident). These low rates of comfort
levels from adult neurologist responders were significantly
different (p < 0.001) from levels from other categories of
professionals (adult epileptologists, pediatric neurologists,
and pediatric epileptologists). Finally, only 15.4% of adult
neurologists reported confidence in dealing with patients
who have E+ID and/or epilepsy plus autism spectrum disor-
der (ASD).27 These data indicate the importance of involve-
ment of focused epilepsy professionals in the transition
process.
The new era of genetic diagnosis is adding to the discom-
fort of adult neurologists who care for those adult patients
who have a genetic epilepsy and intellectual disability. For
many years, most physicians trained in adult neurology or

Figure 3.
New Era of Genomic Diagnosis. Adult neurologists are usually comfortable seeing transitioned patients whose epilepsy’s etiologies are
similar to those seen in juvenile and adult-onset epilepsy (i.e., temporal lobe epilepsy, genetic generalized epilepsies, epilepsies associated
to malformation of cortical development, epilepsy associated to low grade tumors, and so on). Patients with epilepsy and intellectual dis-
ability or ASDs used to be seen and treated (almost homogeneously) as patients with “symptomatic epilepsy.” However, next-generation
sequencing allows precise diagnosis in those patients, and adult neurologists are now receiving patients from the pediatric system with
specific genetic diagnoses. Traditionally, adult neurologists were not trained to treat these patients according to their genetic etiology,
adding to their discomfort with management of these patients with complex conditions.
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adult epilepsy would see all patients transferred from the
pediatric neurologists simply as grown-ups with epilepsy.
Most patients with severe E+ID were classified as having
“symptomatic or cryptogenic epilepsy” and were all man-
aged in a very similar manner by the adult practitioner. Most
adult neurologists have not been trained to treat patients
based on their genetic etiology, which further increases their
discomfort as they receive increasing numbers of patients
with clear genetic mutations that determine their phenotype
(Fig. 3). Furthermore, the adult neurologist may not con-
sider screening for some of the comorbidities associated
with specific genetic epilepsies such as parkinsonian fea-
tures in patients with Dravet syndrome.59
Screening tools for adolescents with E+ID
Often the disabilities of patients with E+ID are clear with-
out any specific testing. However, further social and finan-
cial support for adults with ID may be obtained only when
there is objective evidence of disability beyond seizures.
Adaptive functioning tests such as the Vineland Adaptive
Behavior Scales or Adaptive Behavior Assessment Systems
are the instruments used to document these kinds of disabili-
ties for patients with E+ID. Trained staff are required to
administer these instruments.
Step 5 (Ages 16–19): Reevaluate
the Epilepsy Diagnosis
It is our impression that young adult patients with drug-
resistant epilepsy usually have had extensive and repeated
investigations during childhood. After several rounds of
unfruitful tests and stable (although poor) seizure control,
the pediatric health care team, parents, and patients agree
that the diagnostic odyssey should be halted and the focus
should be on treatment only. In other patients, etiology has
been identified but not revised. Most patients transferred to
an adult epileptologist are still having seizures,1,3,4 so it is
usually reasonable to revisit the epilepsy/seizure etiology,
to optimize treatment.
This reevaluation may take place in the pediatric or adult
center depending on available expertise. It may include
careful interview, clinical electrophysiology studies (EEG),
imaging (magnetic resonance imaging, MRI), genetic, and
psychiatric evaluations.
Reevaluation of paroxysmal events in adolescents with
E+NI
Patients with a history of infancy or childhood-onset epi-
lepsy may also develop psychogenic nonepileptic seizures
(PNES) in adolescence.60,61 PNES may be diagnosed during
the interview or with homemade videos. However, more
extensive investigations with ambulatory or inpatient con-
tinuous video-EEG recordings may be needed. Of course,
PNES and epileptic seizures may coexist, but the identifica-
tion of PNES creates the possibility of proper treatment for
Epilepsia, 58(9):1502–1517, 2017
doi: 10.1111/epi.13832
psychiatric comorbidities that had remained unaddressed
during childhood and adolescence.
Reevaluation of paroxysmal events in adolescents with
E+ID
These patients frequently have complex forms of epi-
lepsy, with different seizure types.46 Parents may quickly
learn that “new seizure types” are part of the natural evolu-
tion of their children’s epilepsy. It may be difficult for par-
ents to distinguish abnormal behavior, mannerisms, or
autonomic changes (facial flushing, pupil dilation, and so
on) from epileptic seizures.62 For instance, during EEG
monitoring of patients with Rett syndrome, parents were
asked to identify events that they felt were representative of
their child’s “typical seizures.” Upon review, 42% of the
events identified by parents were not associated with elec-
trographic abnormalities.63
Therefore, reevaluation of seizures during the transition
process is needed to identify which clinical events might
respond to AEDs. Discussion about what/when/how to treat
paroxysmal events should be included in the “goals of care”
part of the “pediatric discharge package” (see below).
EEG and video-EEG monitoring
Some patients with epilepsy have undergone EEG studies
only around the time of epilepsy onset. Repeating electro-
physiology studies around the time of transition should be
considered if the patient is not seizure-free, if seizure semi-
ology has changed, or if there is a question of seizures ver-
sus mannerisms, abnormal behavior (especially in E+ID), or
PNES. Such reevaluation may be carried out before the
patient leaves the pediatric system. As discussed earlier,
many adult institutions do not have the technical support
required to perform EEG in patients with moderate or severe
intellectual disability, agitation, ASD, or behavioral prob-
lems.
If epilepsy surgery is deemed possible and the patient is
too close to the cutoff age of transfer for the pediatric team
to perform surgery, then reevaluation should be postponed
until the patient is accepted by the adult health care team.
Imaging
Brain MRI should be done around the time of transition
in the following situations: (1) if the patient has never had a
MRI, but is still having seizures; (2) if previous MRIs have
shown a progressive or potentially changing lesion such as a
tumor; (3) if there is a change in the clinical picture (signifi-
cant worsening of seizures or new symptoms such as tremor,
ataxia, cognitive decline, etc), (4) if there is no clear epi-
lepsy syndrome or etiologic diagnosis, or (5) if previous
MRI studies were not carried out with an appropriate seizure
protocol or at a low-resolution.
General anesthesia may be needed for MRI in patients
with E+ID due to their inability to cooperate. Although gen-
eral anesthesia for diagnostic MRI can easily be obtained in

pediatric institutions, such an approach is uncommon in
most adult institutions. Therefore, for patients with E+ID
who are transitioning to an adult neurology service that does
not provide MRI under general anesthesia, an MRI before
leaving the pediatric system should be considered.
Finally, if it is deemed that an MRI is not necessary, this
should be discussed with the patient and family prior to
transfer so that they understand the reasoning and will not
expect it be done at the adult site. This discussion should
also be documented in the “goals of care” piece of the “pedi-
atric discharge package” (see below).
Genetic testing
Many adolescents with epilepsy would have had a “com-
plete” diagnostic workup when the epilepsy first manifested.
However, technologies such as genome-wide chromosome
microarray and massive parallel sequencing, including multi-
gene panels and whole exome or whole genome sequencing,
were not available when these patients were first investi-
gated. Many genes that today are known to be responsible
for epilepsy had not been identified or linked to epilepsy just
a few years ago.64–69 Reinvestigation of a putative genetic
etiology of epilepsy as part of the transition process is espe-
cially important if intellectual disability, developmental
delay, ASD, dysmorphism, or multiple congenital anomalies
are also present. Many of these children and adolescents with
epilepsy shown to have normal karyotypes previously, have
been diagnosed with pathogenic copy number variations or
single-gene mutations more recently.70–74
A very important reason to carry out state-of-the-art
genetic investigations during the transition process is that
recent genetic findings have afforded customized treatment,
leading to a dramatic improvement in some children who
have rare severe epilepsies associated with rapid neurologic
deterioration.75,76 The value of identifying a genetic etiol-
ogy in adolescents, after significant and likely irreversible
neuronal damage already has occurred, may be questioned.
However, there are a number of benefits that may accrue
from finally uncovering the etiology of epilepsy in these
adolescents: (1) identifying a genetic cause will often put an
end to the diagnostic odyssey; (2) closure: finally obtaining
a genetic diagnosis may improve parent’s quality of life77;
(3) availability of genetic counseling for unaffected siblings
wishing to start a family, especially when the affected sib-
ling has severe epilepsy or E+ID; and (4) some treatment
adjustments, even decades after epilepsy onset (one of the
best examples is the avoidance of Na+ inhibitor-AEDs in
patients with Dravet syndrome78 due to SCN1A mutation.)
It is yet unknown if genetic diagnosis may affect the risk of
SUDEP. Recently a few genes were linked to SUDEP.79–86
Some of these genes are associated with cardiac conduction
defects, which could be aggravated by AEDs that increase
QT interval on electrocardiography (ECG).
1511
Epilepsy Transition
Step 6 (Ages 16–17): Identify
Obstacles for Continuation of
Treatment of Drug-Resistant
Epilepsies
Availability of neuromodulation in the AHCS
Continuity of treatment in the AHCS must be ensured for
patients benefitting from neuromodulation therapies. This
includes access to epileptologists who are familiar with the
neuromodulation equipment and availability of device bat-
tery replacements in the AHCS. Battery replacement may be
determined by health insurance coverage, which may change
after patients are no longer under their parents’ coverage.
Diet therapy for epilepsy
Traditionally, the ketogenic diet, when successful, is
maintained for at least 2 years. However, some patients
have recurrence or worsening of seizures with weaning from
the diet.87 Some patients with specific genetic defects such
as glucose transporter disorders require long-term dietary
treatment.88,89 There are >250 pediatric diet therapy centers
worldwide; however, only a handful of adult centers offer
diet treatment for epilepsy.90–92 This disparity represents a
huge challenge for patients with successful dietary response
who are moving to the AHCS. Some pediatric centers con-
tinue to manage these patients, although this is not ideal.
Other patients are transitioned to a diet that is easier to man-
age without close supervision, such as the modified Atkins
diet or the low glycemic index diet. However, maintaining
these diets without supervision for long periods can easily
lead to inadequate dietary intake (and subsequent loss of
anticonvulsant efficacy) or to serious side effects, such as
high cholesterol and kidney stones. Most transitioning
patients despite the risk of worsening seizures are weaned
from the diet due to lack of resources in adult centers.
Therefore, there is an urgent need for more epilepsy diet
programs in the adult epilepsy centers.
Step 7 (Ages 17–18 years):
Prepare the Pediatric Discharge
Package
Transfer from the pediatric to AHCS may be a time of
worry, stress, and anxiety for all involved, including the
adult neurologist/epileptologist who will receive a new
patient, who may have a complex condition, with severe,
drug-resistant epilepsy. For the best continuity of care, it is
important that all involved (adult epilepsy HCPs, PCP, other
specialists, patient, and family) receive a thoroughly com-
pleted discharge package from the pediatric care provider
(s). The following items should always be covered in the
Pediatric Discharge Package (Fig. 1).
Epilepsia, 58(9):1502–1517, 2017
doi: 10.1111/epi.13832
1512
D. M. Andrade et al.

Transition readiness questionnaires
Copies of the questionnaires completed previously by
the patient and his/her caregivers should be included,
along with notes about measures taken to improve their
readiness.
Results of psychosocial screening
Copies of the screening tests should be included as well
as notes regarding which measures were taken (or pending)
for each of the psychosocial issues uncovered.
Epilepsy history form
This document should include a detailed description
of the seizure semiology (Table 3), evolution over time,
previous investigations (EEG, MRI, and genetic and
metabolic tests results), a list of medications and other
treatments tried with results and side effects, and an
account of any epilepsy surgery that is planned or that
has been performed along with pathology results. In
addition, other medical, neurodevelopmental, and
psychiatric comorbidities and their treatments should be
listed.
Seizure emergency plan
This plan should be updated prior to the patient leaving
the pediatric system. It should also clarify who should be
contacted in case of emergencies before the transition is
finalized.

Table 3. Epilepsy History Form (to be completed by the pediatric neurologist/epileptologist).

1. Etiology:_______________________________________________________________

2. Epilepsy syndrome: ______________________________________________________

3. Age of onset (first seizure): first febrile seizure________ first afebrile seizure_________

4. Seizure types over the course of the illness:___________________________________

_________________________________________________________________________

5. Present seizure control with seizure descriptions and frequency (date of most recent by
type):__________________________________________________________________
______________________________________________________________________
______________________________________________________________________
______________________________________________________________________

6. Precipitating factors:_____________________________________________________

7. Neurological examination and intellectual assessment:

a) Neurological exam:
__ Normal or ___abnormal
(Explain abnormal findings)______________________________
b) Intellectual evaluation:
__ Normal intelligence
__ Mild learning disability
__ Moderate or severe intellectual disability

• Intellectual evaluation was determined by:

__ Pediatrician in the clinic
__ School reports
__ Psychiatrist
__ Psychologist
__ Other (explain) _______________

• Psychiatric comorbidities:
__ None
__ Depression
__ Anxiety
__ Psychosis
__ Autism spectrum disorder
__ Other (explain) __________________________
Continued

Epilepsia, 58(9):1502–1517, 2017

doi: 10.1111/epi.13832
 1513
Epilepsy Transition

Table 3. Continued.
• Psychiatric evaluation completed by:
___ Patient self-assessment
___ Psychiatrist
___ Social worker
___ Other (explain)
___ Not done

8. CT results and dates _____________________________________________________

9. MRI results and dates ____________________________________________________

10. EEG summary of significant findings over the years and date of most recent EEG

11. Video EEG: Not done___ Done____(Please attach all test results)

12. MEG: Not done ___ Done___ (Please attach all test results)

13. SPECT: Not done ___ Done___(Please attach all test results)

14. PET: Not done ___ Done___ (Please attach all test results)

15. Metabolic tests: Not done __ Done____ (Please attach all test results [positive and
negative])

16. Genetic tests: None done ___ Done ____ Date____________ Type_________
Results______________________ (Please attach all test results)

17. Surgery: Not done ___Done___

a. Date of surgery:__________________
b. Hospital name: ____________________
c. Type of surgery: ___________________
d. Pathology report: _____________________

18. Seizure control 1 year after surgery: _________________________________________

Current seizure control:___________________________________________________

19. Neuromodulation: Not done______ Done _________

a. VNS or other device: implanted at the age of ________
b. Battery replaced at the age of ________
c. Battery not replaced ________________
d. Seizure control after VNS implantation:_________________________________

20. Ketogenic or other diet for epilepsy:

• Never done_____
• Tried between the ages of ________ and __________.
• Results: _________________________________________________________
• Reasons for discontinuation: _________________________________________
• Plans to continue on the diet? ___Yes ___No

21. Longest seizure-free interval _______________________________________________

22. Antiepileptic drugs (AEDs) used previously, top dosage and reason for
discontinuation:__________________________________________________________
______________________________________________________________________
______________________________________________________________________
Continued

Epilepsia, 58(9):1502–1517, 2017

doi: 10.1111/epi.13832
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D. M. Andrade et al.

Table 3. Continued.
23. Present AEDs and length of time on this regime at the time of transfer
______________________________________________________________________
______________________________________________________________________
______________________________________________________________________

24. Rescue medications presently used:_________________________________________

25. Other medications/supplements used regularly:

Calcium/vitamin D _______________
Folic acid (dose) ________________
Others: ________________________
Contraception (type) ______________

26. Episodes of status epilepticus or nonconvulsive status _____negative _____positive

(explain how many times, triggers, previous treatment successes and
failures)________________________________________________________________
______________________________________________________________________

27. History of cluster of seizures: _____ negative ___ positive (explain seizure type, duration
and rescue medication)___________________________________________________
______________________________________________________________________
______________________________________________________________________

28. Febrile seizure history____________________________________________________

29. Family history of epilepsy or other relevant conditions____________________________

30. Other significant medical conditions/comorbidities_______________________________

______________________________________________________________________
______________________________________________________________________

Modified from Camfield et al. Transition from Pediatric to adult epilepsy care: a difficult process marked by medical and social crisis. Epilepsy Curr. 2012; 12
(Suppl 3):13–21.

Goals of care Community, social, and financial support

Clear documentation of a discussion (between pediatric
neurologist, patient, and caregivers) about goals of care for
the patient should be included in the discharge package.
Examples include the following: defining which paroxys-
mal events will be treated and how; if drug levels should
continue to be monitored routinely once the patient’s weight
and height are not changing so quickly; etc.
Referrals
A list of all referrals to required adult specialties should
be included along with the contact information of the provi-
der responsible for follow-up on the referral. For instance, if
a patient sees a pediatric psychiatrist, does he/she need to be
referred to an adult psychiatrist? If so, will the referral be
made by the pediatric psychiatrist, by the pediatric neurolo-
gist, or by the PCP? It is important to provide the patient and
family with the name and date of appointments with the new
adult specialists, as well as a plan to deal with emergencies
that could happen between the discharge from the pediatric
specialist and the consultation with the new adult specialist.
This includes documentation of the kinds of support
needed and what is already in place. Around the time
of transition, families often experience an increased
need for support and services for a wide variety of rea-
sons such as behavioral disorders, additional equipment
due to patient growth, greater need for supervision, edu-
cational support after leaving school, occupational, phys-
ical, and speech therapy, residential placement, etc. As
well, there are very important legal considerations in
terms of consent and managing of affairs, that should
be addressed before the patient turns 18, particularly for
those with E+ID.
The Role of the Primary Care
Provider
Parents and patients with epilepsy often have strong
bonds with their pediatric health care team. Although
many specialists may be involved in their care, the PCP
usually does not change during the entire transition

Epilepsia, 58(9):1502–1517, 2017

doi: 10.1111/epi.13832

period. Therefore, the PCP should be involved very early
in the transition process (when the patient is 12- to 15-
years-old). The PCP may help in arranging referrals to
adult specialists other than epileptologists, ensure that all
referrals were accepted and all aspects of care are in
place, and liaise with community agencies to provide
social and medical support at home. Patients that are fol-
lowed by a general pediatrician may face another chal-
lenge to find a new adult PCP.
Conclusion and Future
Directions
Transition from pediatric to adult health care is a challeng-
ing process for patients with epilepsy. A healthy interaction
between PCP, pediatric neurologist, and adult health care
team is of paramount importance. Multidisciplinary transi-
tion programs are ideal to manage the multiple issues in ado-
lescents with epilepsy. Joint clinic visits between the
pediatric and adult health epilepsy care teams are ideal, but
not always possible. When transition programs are not avail-
able, adolescents need to have a plan for diagnostic reevalua-
tion, an updated treatment plan, and screening for
comorbidities. It is important to remember that some forms
of pediatric-onset epilepsy are marked by seizures that are
uncommonly seen in patients with adult-onset epilepsy.
Therefore, the adult HCP may not be familiar or comfortable
treating those types of childhood-onset seizures.27 In this
regard, the more information the pediatric team provides to
the adult team, the better are the chances of a successful tran-
sition. Finally, although some forms of pediatric epilepsy
remit as patients get older, comorbidities such as learning
disability, impulsivity, depression, anxiety, and other neu-
ropsychiatric issues remain.45 A multidisciplinary transition
program should also aim to manage these comorbidities.
Future studies comparing different models of transition
are needed.21 Successful outcomes following transition
should evaluate not only seizure control, but overall psycho-
logical and social outcomes, quality of life measures, and
health care costs. Additional studies are needed to determine
how transition outside tertiary centers is accomplished and
how it can be improved.
Another area that deserves attention is the training of
adult neurologists and epileptologists in managing pedi-
atric-onset epilepsies. This is especially important for the
treatment of patients with E+ID, who may also have ASD,
behavioral problems, and other congenital abnormalities.
There is a growing understanding of a plethora of genetic
causes for E+ID.
Armed with this knowledge, one may identify some
homogenous groups of patients with E+ID, whose seizures
may be amenable to customized treatment in some cases.
However, most adult neurologists and epileptologists have
limited knowledge about ordering and interpreting genetic
1515
Epilepsy Transition
tests. Indeed, many adult neurologists who care for patients
with epilepsy have yet to incorporate the idea of repeating
genetic investigations in patients who were investigated in
the past with less sophisticated tests than those currently
available. In the field of cardiology, there are “adult congen-
ital heart disease” training programs leading to board certifi-
cation.93–95 A similar training stream could be developed
for managing at least a subset of “adults with pediatric-onset
epilepsies.”
Acknowledgments
The Provincial Guidelines for Transitional Care of Paediatric Epilepsy
Programs to Adult is the result of a collaborative effort between Critical
Care Services Ontario (CCSO), the Epilepsy Implementation Task Force
(EITF), and the Provincial Neurosurgery Advisory Committee (PNAC).
The EITF was established in June 2013 to develop and implement a provin-
cial framework to maximize value from the system of epilepsy care in
Ontario. CCSO supports the work of the EITF, a subgroup of the PNAC, as
part of its mandate to support equitable and timely access to neurosurgical
care, including epilepsy, and to help maintain the province’s neurosurgical
capacity.
Disclosures
None of the authors has any conflict of interest to disclose. We confirm
that we have read the Journal’s position on issues involved in ethical publi-
cation and affirm that this report is consistent with those guidelines.
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Epilepsia, 58(9):1502–1517, 2017
doi: 10.1111/epi.13832