Accepted: 13 May 2018

DOI: 10.1111/epi.14444

CRITICAL REVIEW AND INVITED COMMENTARY

Psychological treatments for adults and children with epilepsy:

Evidence-based recommendations by the International League
Against Epilepsy Psychology Task Force

Rosa Michaelis1,2,3 | Venus Tang4,5 | Laura H. Goldstein6 | Markus Reuber7 |

8 9 10
William Curt LaFrance Jr. | Tobias Lundgren | Avani C. Modi | Janelle L. Wagner11

1
Department of Neurology, Herdecke Community Hospital, University of Witten/Herdecke, Herdecke, Germany
2
Integrated Curriculum for Anthroposophical Medicine (ICURAM), Witten/Herdecke University, Herdecke, Germany
3
Department of Neurology, Center for Cognitive Neuroscience, Paracelsus Medical University, Salzburg, Austria
4
Division of Neurosurgery, Department of Surgery, Faculty of Medicine, Chinese University of Hong Kong, Shatin, Hong Kong
5
Department of Clinical Psychology, Prince of Wales Hospital, Shatin, Hong Kong
6
Department of Psychology, Institute of Psychiatry, Psychology, and Neuroscience, King’s College London, London, UK
7
Academic Neurology Unit, Royal Hallamshire Hospital, University of Sheffield, Sheffield, UK
8
Departments of Psychiatry and Neurology, Rhode Island Hospital, Brown University, Providence, RI, USA
9
Department of Clinical Neuroscience, Center for Psychiatry Research, Karolinska Institute, Stockholm, Sweden
10
Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children’s Hospital Medical Center, University of Cincinnati College of
Medicine, Cincinnati, OH, USA
11
College of Nursing and Department of Pediatrics, Medical University of South Carolina, Charleston, SC, USA

Correspondence
Rosa Michaelis, Department of Neurology, Summary
Herdecke Community Hospital, University Given the significant impact that psychosocial factors and epilepsy treatments can
of Witten/Herdecke, Herdecke, Germany.
have on the health-related quality of life (HRQOL) of individuals with epilepsy
Email: [email protected]
and their families, there is great clinical interest in the role of psychological eval-
Funding information uation and treatments to improve HRQOL and comorbidities. Therefore, the Inter-
NIHR Maudsley Biomedical Research
national League Against Epilepsy (ILAE) charged the Psychology Task Force
Centre at the South London and Maudsley
NHS Foundation Trust and King’s College with the development of recommendations for clinical care based on evaluation of
London; Integrated Curriculum for the evidence from their recent Cochrane review of psychological treatments in
Anthroposophic Medicine; MAHLE
individuals with epilepsy. The literature search for a recent Cochrane review of
Foundation
randomized controlled trials investigating psychological treatments for individuals
with epilepsy constitutes the key source of evidence for this article. To provide
practical guidance to service providers, we provide ratings on study research
designs based on (1) the American Academy of Neurology’s Level of Evidence
system and (2) the Grading of Recommendations, Assessment, Development, and
Evaluation system. This paper is the culmination of an international collaboration
process involving pediatric and adult psychologists, neurologists, psychiatrists,
and neuropsychiatrists. The process and conclusions were reviewed and approved
by the ILAE Executive Committee. The strongest evidence for psychological

A.C.M. and J.L.W. contributed in equal measure to this article and should
be considered joint last authors of this contribution.

1282 | Wiley Periodicals, Inc. wileyonlinelibrary.com/journal/epi Epilepsia. 2018;59:1282–1302.

© 2018 International League Against Epilepsy
MICHAELIS ET AL. | 1283

interventions was identified for the most common mental health problems, includ-
ing depression, neurocognitive disturbances, and medication adherence. Psycho-
logical interventions targeting the enhancement of HRQOL and adherence and a
decrease in comorbidity symptoms (anxiety, depression) should be incorporated
into comprehensive epilepsy care. There is a range of psychological strategies (ie,
cognitive behavioral therapy and mindfulness-based therapies) that show promise
for improving the lives of persons with epilepsy, and clinical recommendations
are provided to assist epilepsy health care providers in treating the comorbidities
and challenges associated with epilepsy and its treatments.

KEYWORDS
anxiety, depression, nonpharmacological seizure management, psychoeducation, screening, stigma

1 | INTRODUCTION
Key points
Among the treatment tools for individuals with epilepsy,
which include medication, diet, surgery, neuromodulation, • There are no previous specific recommendations
and psychological interventions, the latter most specifi- for clinical practice based on the quality of the
cally aim to improve health-related quality of life evidence for psychological treatments in patients
(HRQOL). Individuals with epilepsy have a lower with epilepsy
HRQOL than healthy individuals and individuals with • Ratings on study research designs were based on
other chronic diseases.1 Even a single seizure is associ- the American Academy of Neurology’s Level of
ated with reduced HRQOL.2 Several factors contribute to Evidence system
poor HRQOL, especially when seizure freedom cannot be • Evidence-based recommendations were based by
achieved, including medication side effects,3–5 the number the Grading of Recommendations, Assessment,
of antiepileptic drugs (AEDs),4,6 psychological symptoms Development, and Evaluation system
(eg, depression7,8), and psychosocial difficulties (eg, • The best evidence of effectiveness of psychologi-
unemployment).9 cal interventions was identified for depression,
Given the significant impact that psychosocial factors medication nonadherence, and neurocognitive
and epilepsy treatments can have on the HRQOL of indi- disturbances
viduals with epilepsy and their families, there is great clini- • Evidence supports that psychological therapies
cal interest in the role of psychological evaluation and should be considered in the treatment of individ-
treatments to improve HRQOL. Although several recent uals with epilepsy to improve HRQOL and
systematic and meta-analytic reviews of psychological comorbidities
treatments for individuals with epilepsy have been con-
ducted,10–13 and consensus statements regarding psycholog-
ical/psychiatric care for individuals with epilepsy have The findings are intended for health care practitioners
been published,14,15 specific recommendations for clinical around the world.
practice based on the quality of the evidence for psycho-
logical treatments have not yet been developed.
2 | METHOD OF EVALUATING THE
Therefore, the International League Against Epilepsy
QUALITY OF PSYCHOLOGICAL
(ILAE) charged the Psychology Task Force with the devel-
TREATMENTS
opment of recommendations for clinical care based on the
evaluation of the evidence from their recent Cochrane
2.1 | Operational definition of psychological
review of psychological treatments to improve HRQOL in
treatments
individuals with epilepsy.12,13 This paper is the culmination
of a process of international collaboration involving pedi- “Psychological treatment” refers to a broad range of inter-
atric and adult psychologists, neurologists, psychiatrists, ventions for children and adults that encompass psycholog-
and neuropsychiatrists. The process and conclusions were ical or psychiatric nonpharmacological interventions for
reviewed and approved by the ILAE Executive Committee. individuals, families, and groups, as well as self-/family
1284
| MICHAELIS ET AL.

management, adherence, and educational interventions (see Tolin et al19 to include 3 levels (VERY STRONG,
Table 1). Intervention elements may be administered on STRONG, and WEAK recommendation) for evaluation of
their own or in combination. Whereas some intervention the quality of evidence for RCTs in the clinical psychology
elements are universally applicable, other elements address literature. Using Tolin’s 3 levels (see Table 2), we evaluate
epilepsy and seizures more specifically. Interventions can the quality of evidence for psychological treatments for
target specific mental health disorders (anxiety, depression) specific disorders (eg, depression, anxiety) in addition to
or particular behaviors related to the management of epi-
lepsy (adherence, coping). Although differences in theoreti-
cal underpinnings and treatment targets limit the scope of
comparisons,11 there is overlap among the psychological
treatments that can be applied to individuals with epilepsy.

2.2 | Source of evidence for

recommendations
The literature search for a recent Cochrane review of
randomized controlled trials (RCTs) investigating psycho-
logical treatments for individuals with epilepsy constitutes
the key source of evidence for this article.12,13 Whereas
the Cochrane review focused on HRQOL and therefore
excluded studies that did not include HRQOL as an
outcome parameter, the present evidence-based recommen-
dations included all RCTs investigating psychological inter-
ventions in individuals with epilepsy (Figure 1).

2.3 | Method of evaluation

To provide practical guidance to service providers, we pro-
vide ratings on study research designs based on (1) the
American Academy of Neurology (AAN) Level of Evi-
dence (LOE)16 system and (2) the Grading of Recommen-
dations, Assessment, Development, and Evaluation
(GRADE) system.17,18 GRADE has been modified by F I G U R E 1 Flowchart of study selection

T A B L E 1 Terminology for psychological interventions

Intervention Goal Type of therapies used
Psychological interventions • To reduce psychological distress (eg, depressive or • Cognitive-behavioral therapies
anxiety symptoms) • Behaviorally based therapies
• To improve adjustment and coping with epilepsy • Acceptance and commitment therapy
and its treatments • Motivational interviewing
Self-/family management • Activities or steps that an individual or family can • Cognitive-behavioral
and adherence intervention perform that are known to either influence the frequency • Motivational interviewing
of seizures or promote the well-being of the person with • Family therapy
seizures
• Activities or steps can lie within the individual, family,
community, or health care system domains
Adherence interventions • Helping patients adhere to the advice of health care • Problem solving
providers, including taking antiepileptic drugs, following • Intention
a ketogenic diet, and avoiding seizure triggers • Motivational interviewing
• Medication taking can be broken down into several • Family therapy
components, including optimal dose timing and adequate
frequency of dosing
Educational interventions • Increase knowledge of epilepsy and its treatments or the • Psychoeducation (group or individual
working of the brain formats)
MICHAELIS ET AL. | 1285

T A B L E 2 Modified GRADE recommendations for psychological treatments based on systematic reviews

Recommendation

VERY STRONG All of the following:

recommendation • There is high-quality evidence that the treatment produces a clinically meaningful effect on symptoms of the
disorder being treated
• There is high-quality evidence that the treatment produces a clinically meaningful effect on functional outcomes
• There is high-quality evidence that the treatment produces a clinically meaningful effect on symptoms and/or
functional outcomes at least 3 mo after treatment discontinuation
• At least 1 well-conducted study has demonstrated effectiveness in nonresearch settings
STRONG At least 1 of the following:
recommendation • There is moderate- to high-quality evidence that the treatment produces a clinically meaningful effect on symptoms
of the disorder being treated
• There is moderate- to high-quality evidence that the treatment produces a clinically meaningful effect on functional
outcomes
WEAK Any of the following:
recommendation • There is only low- or very low-quality evidence that the treatment produces a clinically meaningful effect on
symptoms of the disorder being treated
• There is only low- or very low-quality evidence that the treatment produces a clinically meaningful effect on
symptoms of the disorder being treated as well as on functional outcomes
• There is moderate- to high-quality evidence that the effect of the treatment, although statistically significant, may
not be of a magnitude that is clinically meaningful
Adapted from Guyatt et al.18 Reproduced with permission from Tolin et al.19
GRADE, Grading of Recommendations, Assessment, Development, and Evaluation.

seizure outcomes, adherence, and epilepsy education and Cultural issues and differences that may affect implementa-
provide clinical recommendations for use of indicated treat- tion and utilization will be mentioned; however, an elaborate
ments. If the evidence base for a given treatment is of low discussion of cultural considerations and implications is
quality or lacking entirely, we highlight the need for further beyond the scope of this paper.
research in this area. We also provide a brief overview of The authors are aware of the challenges of clinical trans-
treatment delivery, including options for resource-poor set- lation marked by the gap between ideal care and real care
tings, as well as service considerations including recom- constraints in busy clinical settings, in which trained staff
mendations for inpatient and outpatient treatment facilities often necessary to deliver evidence-based interventions are
and for training. lacking. However, it is relevant for all providers to focus on
early identification and prevention of comorbidity, which
could be time- and cost-effective, as HRQOL is a significant
2.4 | Notable considerations predictor of health care charges in epilepsy, with poorer
Psychological treatments tend to be complex multicompo- HRQOL predicting greater health care charges.21–23
nent interventions, that is, several intervention components
may be incorporated in diverse therapeutic approaches (eg,
3 | AVAILABLE EVIDENCE FOR
education plus skills training) and studies with different treat-
PSYCHOLOGICAL TREATMENT ACROSS
ment targets, and therefore the same intervention components
THE EPILEPSY SPECTRUM: RELEVANCE
will be mentioned in various sections throughout this article.
TO CLINICAL PRACTICE AND
Special issues relating to pediatric populations will be
RECOMMENDATIONS
included in each subsection. Level 3 and Level 4 Specialized
Epilepsy Centers are required to have a psychologist and
3.1 | Evidence-based screening: Selecting
social worker as part of their centers; however, which psy-
patients for psychological treatment in the
chosocial services are offered are not specified.20 Because
clinical setting
psychological treatment delivery varies within and across
countries and settings, we will mostly refer to “mental health
3.1.1 | Evaluation of the evidence for
care providers” without specifying their professional groups.
psychological screening
Mental health care providers can include psychiatrists, psy-
chologists, psychotherapists, licensed clinical social workers, Psychological disorders are at least twice as common in
neurologists with therapy training, neuropsychiatrists, and individuals with epilepsy as the general population24,25;
psychiatric nurses, among other mental health professionals. therefore, standard screening procedures for patients newly
1286
| MICHAELIS ET AL.

diagnosed with epilepsy, as well as for patients with as executive functioning and oppositional or hyperactive
chronic epilepsy, should be integrated into routine epilepsy behaviors.44 Caregivers are also critical reporters when
care.15,21,26 Symptom screening assists in the identification children have cognitive impairment developmental delays
of individuals who may benefit from psychological treat- or are too young to provide valid responses.
ments. To address the issue, the AAN has included screen-
ing for psychiatric or behavioral disorders at each epilepsy
3.1.3 | Recommendations for psychological
encounter as a new quality measure for the delivery of
screening
optimal care and better outcomes for individuals with
epilepsy.27 Psychological screening is indicated, given the high preva-
Epilepsy-specific measures are now available to evaluate lence of mental health disorders in individuals with epi-
psychosocial functioning, including depressive symptoms lepsy. According to the AAN practice guideline, patients
and HRQOL. For example, the 6-item self-report survey, with epilepsy should complete mental health screenings as
Neurological Disorders Depression Inventory for Epilepsy part of routine epilepsy care.27 Specific clinical recommen-
(NDDI-E), is an epilepsy-specific screening tool for major dations include:
depression,28 and its feasibility has been demonstrated in a
routine clinical setting.29 Annual use of the NDDI-E has 1. Each epilepsy visit should include, at a minimum, a
previously been recommended by the ILAE neuropsychi- clinical question regarding mental health and quality of
atric commission.26 It has been validated in many lan- life. Screening is encouraged at epilepsy diagnosis, prior
guages, is freely available, and has been tailored for use in to and following AED initiation or changes, and at rou-
young people (NDDI-E-Y).30 tine time intervals (eg, yearly).
Screening measures for other aspects of psychological 2. Practitioners should consider multi-informant screenings
functioning (eg, HRQOL, AED side effects) may provide for children and also for adults, when indicated and
beneficial information regarding patient well-being. Psycho- available.
metrically sound and free epilepsy-specific HRQOL tools 3. A measure of psychological functioning should be
include the Quality of Life in Epilepsy (QOLIE) adult administered prior to AED initiation and over the course
(QOLIE-10, QOLIE-31, QOLIE-89) and adolescent (QOLIE- of AED treatment.
48) measures31,32 and the newer PedsQL Epilepsy Mod- 4. Practitioners should consider including a standardized
ules.33,34 Parent-proxy report of their child’s HRQOL can evaluation of AED side effects.
also be obtained via the Quality of Life in Childhood Epilepsy 5. Practitioners are encouraged to consider a measure of
Questionnaire (4-18 years old).35,36 Additionally, the assess- HRQOL.
ment of psychiatric/psychological symptoms at baseline can 6. If screening identifies significant symptoms or a prob-
inform the choice of an AED, given that a history of psycho- lem, patients should undergo a formal mental health
logical symptoms increases the vulnerability to subsequent assessment to inform the selection of the appropriate
behavioral/emotional side effects.37,38 Subsequently, this treatment elements based on individual needs. Family
baseline information can help determine whether psychologi- members may provide key details of past events during
cal symptoms arising during the course of treatment could be this evaluation.
an AED side effect or an exacerbation of a premorbid or
comorbid psychological disorder. Continued assessment of
3.2 | Psychoeducation for patients, parents,
AED side effects over the course of epilepsy can inform
and caregivers
changes to medications and/or alternative treatments (eg, diet)
and is important to consider at each epilepsy visit given the Psychoeducational interventions involve the dissemination
relationship between side effects, adherence, and HRQOL.39 of knowledge and education regarding seizures, treatments,
Standardized evaluation of side effects is available through comorbid conditions, and lifestyle challenges. Most psy-
use of the Pediatric Epilepsy Side Effects Questionnaire40 and chological interventions involve an aspect of education; this
the Liverpool Adverse Event Profile.41,42 next section is reserved solely for interventions that focus
primarily on education and not on the development of
behavioral, cognitive, or meditation skills.
3.1.2 | Considerations for pediatric
populations
3.2.1 | Evaluation of the evidence for
Multi-informant screening is ideal for pediatric populations.
psychoeducational interventions
Although children are often better reporters of their own
internalizing symptoms,43 caregivers can provide a unique According to several national guidelines (eg, Scottish Inter-
and beneficial perspective for some behaviors/deficits, such collegiate Guidelines Network; National Institute of
MICHAELIS ET AL. | 1287

Clinical Health and Care Excellence, United Kingdom; friendly terms, with pictorial representations when possible
American Epilepsy Society), additional personalized infor- or game-based formats. Depending on the child’s develop-
mation on treatment, possible outcomes, and specific risks mental level and chronological age, clinicians may wish to
must be provided to patients and families following an epi- discuss some aspects of epilepsy with caregivers only (eg,
lepsy diagnosis. Patients may experience challenges with sudden unexpected death in epilepsy).
adjustment to and worries about the epilepsy diagnosis
after learning about potential legal, psychosocial, and
3.2.4 | Specific clinical recommendations for
health ramifications.45 Additionally, research indicates that
epilepsy psychoeducation
individuals with epilepsy and/or their caregivers frequently
misunderstand basic information about epilepsy, including Specific clinical recommendations for epilepsy psychoedu-
knowledge about their diagnosis, seizure precipitants or cation include:
triggers, purpose and potential side effects of AEDs, safety
concerns, and the risks of seizures.46–50 A large amount of 1. Each patient with epilepsy should receive psychoeduca-
the variance in HRQOL is explained by individuals’ per- tion.
ceptions of their illness,51,52 and educational interventions 2. Because a diagnosis of epilepsy may create fear and
may modify illness perceptions and improve an individual’s shock in individuals and/or families, a follow-up to the
HRQOL. Therefore, it is prudent to follow up the initial initial diagnosis is recommended to provide specific
communication of an epilepsy diagnosis with (psycho)edu- details regarding psychoeducation for a particular
cation about seizures, treatments and their side effects, patient’s epilepsy symptoms, characteristics, and needs.
comorbid conditions, and self-management and quality of 3. Psychoeducation may focus on seizure knowledge and
life issues.26 The AAN recommends providing personalized treatments, information needs and support, and/or
epilepsy safety information and education on a yearly comorbid conditions.
basis.27 4. Psychoeducation may be provided individually or in a
Of the 15 RCTs investigating educational interventions, group setting.
4 studies were LOE II,53–56 4 studies57–60 were LOE III, 5. Psychoeducation should be provided to patients with
and 7 studies61–67 were LOE IV. All 4 LOE II studies consideration for their developmental level, health liter-
reported improvements in their various primary outcomes: acy, and information and support needs.
medication adherence,53 epilepsy knowledge and satisfac- 6. Clinicians are encouraged to select an evidence-based
tion with information and support,54 medication-related educational intervention that suits the needs of their
problems,54 and HRQOL.56 The LOE II studies investi- patients (adult vs child, group vs individual) and to
gated psychoeducational interventions that were delivered assess before and after outcomes (eg, knowledge) to
by specialized epilepsy nurses or trained medical doctors to monitor whether their patients are learning from the
individuals and included personalized information during intervention.
routine visits or a general information package during a 7. Clinicians are encouraged to continue to routinely assess
series of scheduled sessions. their patient’s needs for psychoeducation about epilepsy,
its treatments, and comorbid conditions across the
lifespan.
3.2.2 | Psychoeducational interventions for
epilepsy receive a GRADE recommendation of
STRONG 3.3 | Depressive symptoms
There is moderate- to high-quality evidence that psychoed- There is substantial evidence supporting the idea of a bidi-
ucational interventions produce a clinically meaningful rectional relationship between epilepsy and depression.
improvement in health-related outcomes in individuals with Shared neurobiological mechanisms, for example, lesion of
epilepsy, including medication adherence, satisfaction with mesial temporal structures and hippocampus volume loss,68
information and support, and HRQOL (Table 3). shed light on the reasons for their coexistence and inter-
linking relationship. Depression may predate the onset of
epilepsy; a history of depression is associated with a two-
3.2.3 | Considerations for pediatric
to fourfold increase in the risk for an unprovoked
populations
seizure.69–71 Depression can also be a psychological reac-
Clinicians are encouraged to take into consideration the tion to epilepsy, and it is a significant predictor of seizure
developmental abilities of children and level of understand- outcomes with pharmacological and surgical treat-
ing when discussing an epilepsy diagnosis with children ments.72,73 There is newer evidence for specific clusters of
and their families. Material should be presented in child- depressive symptoms in persons with epilepsy, with the
 1288
|

T A B L E 3 AAN LOE of studies investigating psychoeducation

Secondary Concealed Masked AAN LOE
Intervention Study Treatment method Primary outcomes outcomes Blinding Randomization allocation assessment Attrition class
Educational Aliasgharpour Epilepsy (psycho) ESMS ↑ ↑ ↓ ? ? ↓ IV
interventions 201363 education program
Dash 201553 MMAS ↑ ↑ ↓ ↓ ↓ ↓ II
64
Helgeson 1990 Misinformation about Fear of seizures ↓ ↑ ? ? ? ↑ IV
epilepsy ↓
Jantzen 200957 DISABKIDS ↑ Disclosure of ↑ ↑ ↑ ↓ ↓ III
epilepsy ↑
Lua 201361 MQOLIE-30 ↑ ? ↓ ? ? ↓ IV
58
May 2002 SF-36 ↔ D-S’ ↔ ↑ ↓ ↑ ↓ ↑ III
Olley 200165 Knowledge about illness ↑ BDI ↓ ↑ ↑ ↑ ↑ ? IV
60
Pf€afflin 2012 Epilepsy knowledge ↑ ↑ ↑ ↑ ↓ ↑ III
62
Pramuka 2007 QOLIE-89 ↔ ↑ ↓ ? ↑ ↑ IV
Rau 200659 KINDL ↔ Seizure ↑ ↑ ↑ ↓ ↑ III
frequency ↔
Ridsdale 200066 Satisfaction with advice ↑ Knowledge of ↑ ↓ ↑ ↑ ↓ IV
epilepsy ↔
Yadegary 201567 QOLIE-31-P ↑ ? ↓ ? ? ? IV
Pf€afflin 201655 Counseling Satisfaction with QOLIE-31 ↔, HADS- ↑ ↓ ↓ ↓ ↑ II
information and support ↑ D ↔, HADS-A ↔
Beretta 201454 Patient-tailored Drug-related problems ↓ QOLIE-31 ↔ ↑ ↓ ↓ ↓ ↓ II
medication education
Mixed Helde 200556 Epilepsy education QOLIE-89 ↑ ↑ ↓ ↓ ↓ ↓ II
+ nurse-led
counseling
↑, significant increase/high risk of bias; ↓, significant decrease/low risk of bias; ↔, result was not significant/unclear risk of bias; AAN, American Academy of Neurology; BDI, Beck Depression Inventory; DISABKIDS,
Quality of Life in Children and Adolescents with Disabilities and Their Families; D-S’, Depressive Mood Scale; ESMS, Epilepsy Self-Management Scale; HADS-A, Hospital Anxiety Depression Scale–Anxiety; HADS-D,
Hospital Anxiety Depression Scale–Depression; KINDL, Gesundheitsbezogene Lebensqualit€at und psychosoziale Auswirkungen der Epilepsie (Health-Related Quality of Life and Psychosocial Consequences of Epilepsy);
LOE, Level of Evidence; MMAS, modified Morisky Medication Adherence Scale; MQOLIE-30, Malay Quality of Life Inventory in Epilepsy-30; QOLIE, Quality of Life Inventory in Epilepsy; SF-36, Short-Form 36.
MICHAELIS
ET AL.
MICHAELIS ET AL. | 1289

more common cluster consisting of a cognitive phenotype Notably, similar to adults, negative cognitions (ineffective-
(eg, self-critical cognitions, such as ineffectiveness).74 ness) may be more relevant than mood symptoms in youth
with epilepsy, and interventions should target such symp-
toms.91 Those who have risk factors for depression (eg,
3.3.1 | Evaluation of the evidence for
family history of mood disorders, coexisting medical condi-
interventions for depressive symptoms
tion, psychosocial adversities) should be evaluated by clini-
Nine RCTs investigated psychological interventions for indi- cians at regular intervals92 for the prevention of clinical
viduals with epilepsy with depression symptoms75–83 or as a depression, early diagnosis, and treatment.
preventative intervention for clinical depression in patients
with subthreshold depressive symptoms.84 The following 7
3.3.4 | Specific clinical recommendations for
studies measured depressive symptoms as secondary out-
depressive symptoms
come: 4 RCTs investigated psychological interventions,85–88
1 RCT investigated a self-management program,89 and 2 Specific clinical recommendations for depressive symptoms
RCTs investigated educational programs.55,65 include:
Of these 16 studies, 1 study was LOE I,84 5 studies were
LOE II,55,75,76,79,86,89 2 studies were LOE III,78,85 and the 1. Depression should be assessed in routine epilepsy care
remaining 8 studies were LOE IV.53,65,77,81–83,87,88 Most following epilepsy diagnosis regardless of drug respon-
LOE I and II studies reported significant reduction in depres- siveness.
sive symptoms; exceptions were 1 depression-specific inter- 2. Psychological interventions can be provided individually
vention LOE II study that reported a reduction in suicidal or in a group format.
ideation but no other significant changes on a generic depres- 3. Treatment components may include behavioral interven-
sion scale75,76 and the educational program55 that did not find tion (eg, social activation) and skill-based interventions
any significant changes in depressive symptoms. The highest (eg, problem solving, social skills training).
level of evidence pertains to skill-based training and behav- 4. Treatment outcomes should be monitored using stan-
ioral interventions. Techniques comprised behavioral and dardized inventories/rating scales.
social activation, problem solving and goal setting skills,
training of social competencies, and identifying social sup-
3.4 | Treatment nonadherence and
port. These were particularly effective in addressing behav-
self-management
ioral symptoms of depression and its associated limitations,
such as social withdrawal, hypersomnia, physical inactivity, Adherence is defined as the extent to which a person’s
and unemployment (Table 4).75,76,84 behavior coincides with medical or health advice.93 In con-
trast, self-management is defined as the interaction of
health behaviors and related processes that patients and
3.3.2 | Interventions for depressive symptoms
families engage in to care for a chronic condition.94 AED
in epilepsy receive a GRADE recommendation
nonadherence ranges from 25% to 50%95,96 in adults and
of STRONG
43%-58%39,97 in children with epilepsy. The consequences
There is moderate- to high-quality evidence that skill-based of nonadherence can be severe, including continued sei-
and behavioral psychological interventions produce a clini- zures,39,98 poor HRQOL,99 higher health care costs and uti-
cally meaningful effect on depressive symptoms, including lization,100 pharmacoresistance,101 and even death.102
suicidal ideation in individuals with epilepsy.
3.4.1 | Evaluation of the evidence for
3.3.3 | Considerations for pediatric interventions for adherence and self-
populations management
There are limited data for the treatment of depression or Three RCTs investigated psychological interventions specifi-
depressive symptoms in pediatric epilepsy populations84; cally aiming at increasing medication adherence.103–105
thus, clinicians are encouraged to base treatment on the Two studies investigated self-management interventions
results of treatment trials conducted with children with that measured medication adherence as a secondary out-
depression in nonepilepsy populations.90 Treatment may come.106,107 Two studies104,107 were LOE II, and the 3
include psychoeducation to children and family as well as remaining studies were LOE IV.103,105,106 Significant
cognitive-behavioral therapy for children,90 and most child- results were reported for the LOE II pediatric adherence
focused depression protocols include strong family involve- intervention, whereas no significant changes were reported
ment in treatment (eg, encouragement of mastery of skills). for the self-management program. Thus, the highest level
 1290
|

T A B L E 4 AAN LOE of studies investigating depression and anxiety

Secondary Concealed Masked AAN LOE
Intervention Study Treatment method Primary outcomes outcomes Blinding Randomization allocation assessment Attrition class
Psychological Ciechanowski 2010 & CBT HSCL-20 ↔, suicidal ↑ ↓ ↓ ↓ ↓ II
treatments Chaytor 201175,76 ideation ↓
Davis 198481 DACL ↓, BDI ↔ ↑ ? ? ? ↓ IV
Gandy 201477 NDDI-E ↓, HADS-D ↓ HADS-A ↔, ↑ ↓ ↓ ↑ ↑ IV
84
Martinovic 2006 BDI ↓, CES-D ↓, HAMD ↓ ↓ ↓ ↓ ↓ ↓ I
78
Orjuela-Rojas 2015 BDI ↓, HADS-D ↔, HADS-A ↔ ↑ ↑ ↑ ↓ ↑ III
MINI ↔
Schr€
oder 201479 BDI ↓ ↑ ↓ ↓ ↓ ↑ II
88
Tan 1986 BDI ↔, ? ? ? ↓ IV
MMPI ↔
Thompson 201080 BDI ↓ ↑ ? ↑ ? ↑ IV
Thompson 201583 BDI ↓, NDDI-E ↓ ↑ ? ? ? ↓ IV
82
Li 2016 SFT HADS-D/HADS-A ↓ ? ? ? ? ? IV
86
Tang 2015 MT BAI ↓, BDI ↓ ↑ ↓ ↓ ↓ ↓ II
87
Tajrishi 2015 Attribution retraining ↓ GHQ ↑ ? ? ? ? IV
Self- Fraser 201589 Consumer-driven PHQ-9 ↓ ↑ ↓ ↓ ↓ ↓ II
management psychoeducation
Psychoeducation Olley 200165 Psychoeducation BDI ↓ ↑ ↑ ↑ ↑ ? IV
55
Pf€afflin 2016 Counseling HADS-D ↔, ↑ ↓ ↓ ↓ ↑ II
HADS-A ↔
Mixed Caller 201685 Cognitive, memory, PHQ-9 ↔, ↑ ↓ ↑ ↓ ↑ III
& self-management NDDI-E ↔
training

↑, significant increase/high risk of bias; ↓, significant decrease/low risk of bias; ↔, result was not significant/unclear risk of bias; AAN, American Academy of Neurology; BAI, Beck Anxiety Inventory; BDI, Beck Depres-
sion Inventory; CBT, cognitive behavioral therapy; CES-D, Center for Epidemiological Study on Depression Scale; DACL, Depression Adjustment Checklist; GHQ, General Health Questionnaire; HADS-A, Hospital Anxi-
ety Depression Scale–Anxiety; HADS-D, Hospital Anxiety Depression Scale–Depression; HAMD, Hamilton Depression Scale; HSCL-20, Hopkins Symptom Checklist-2; LOE, Level of Evidence; MINI, Mini International
Neuropsychiatric Interview; MMPI, Minnesota Multiphasic Personality Inventory; MT, mindfulness therapy; NDDI-E, Neurological Depressive Disorders Inventory–Epilepsy; PHQ-9, Patient Health Questionnaire-9; SFT,
systemic family therapy.
MICHAELIS
ET AL.
MICHAELIS ET AL. | 1291

of evidence pertains to education and teaching families of

(Continues)
AAN LOE
children with epilepsy about problem solving strategies.

class
IV

IV
II
II
3.4.2 | Adherence/self-management
interventions for epilepsy receive a GRADE

Attrition
recommendation of STRONG
There is moderate- to high-quality evidence that multicom-

↓
↑

↓
ponent interventions that include education and problem

assessment
solving produce a clinically meaningful effect on medica-

Masked
tion adherence in children with epilepsy (Table 5).

↓
↓

?
3.4.3 | Considerations for pediatric
populations

Concealed
allocation
Parents are encouraged to partner with children and adoles-
cents to manage the treatment regimen, including supervi-

↓
↓

?
sion regarding taking AEDs and avoidance of seizure
triggers. Parental involvement can aid in ensuring that

Randomization

tbcrrgut=1][?-}
tbcbgsgut=1][?
tpct=-0.5pt][?
tbcfmtv=b][?

tbcbgc=%20
adherence does not decline in adolescents, a vulnerable

ColourA][?
(ancestor::
thead))"[?
developmental period. Technology-focused adherence solu-

skip]>↓
tions may be particularly salient for adolescents.108

↓
3.4.4 | Specific clinical recommendations for
Blinding
T A B L E 5 AAN LOE of studies investigating interventions aiming at improving medication adherence

adherence/self-management ↑

↑
↑

?
Specific clinical recommendations for adherence/self-man-
agement include:
AGAS ↔, MEMS ↔
Primary outcomes

1. Adherence should be assessed during routine clinical

practice in a nonjudgmental and open dialogue.
2. Clinicians are encouraged to assess barriers to adher-
MEMS ↑
MAS ↑

MAS ↑
ence and problem-solve ways to improve adherence.
3. Technology-focused solutions should be used that
enhance reminders and that may be well received and
beneficial in establishing good adherence behaviors.
problem solving
Family-tailored

intervention
Treatment

3.5 | Seizures
method

The aim of nonpharmacological seizure management tech-

MI

MI

niques is to increase life quality as well as decrease seizure

frequency and/or duration. Seizure management techniques
Pakpour 2015103
Dilorio 2009107

Dilorio 2011106

could pragmatically be divided into 3 different approaches:

Modi 2016104

(1) interventions to influence the consequences of seizures,

for example, mindfulness training on awareness and non-
Study

judgmental acceptance of seizure-related physical symp-

toms; (2) interventions to affect the onset of seizures, for
example, discrimination of seizure triggers through a func-
Self-management

tional analysis of individual seizure development and life-

interventions
interventions
Intervention

style recommendations for stress coping; and (3)

Adherence

techniques to abort ongoing seizures, for example, aura

interruption techniques, that is, countermeasures to stop sei-
zures from developing.109–112
1292
| MICHAELIS ET AL.

3.5.1 | Evaluation of the evidence for 1. Clinicians are encouraged to inquire about their
interventions for seizure-related outcomes patients’ interest in learning mindfulness training on
awareness and nonjudgmental acceptance of seizure-
Four RCTs investigated psychological interventions aiming
related physical symptoms.
primarily to decrease seizure frequency.88,113–116 Five stud-
2. Clinicians should provide education to patients and fam-
ies investigated psychological interventions,75,76,82,86,109,110
ily members on the interlinking relationship between
and 2 studies58,59 investigated an educational program that
psychological factors and seizures, and therefore psy-
targeted nonseizure outcomes and included seizure fre-
chological treatments could be included as part of epi-
quency as a secondary outcome. Two studies75,76,86 were
lepsy care.
LOE II, 3 studies were LOE III,58,59,113 and the remaining
3. Clinicians are encouraged to investigate details of sei-
6 studies were LOE IV.82,88,109,110,114–116 A significant
zure development (eg, seizure precipitants, coping) and
decrease in seizure frequency was reported in 1 LOE II
to make lifestyle recommendations relevant to individ-
study86 that focused on mindfulness training together with
ual patients.
a set of lifestyle recommendations that facilitated coping
4. Mindfulness training designed for patients with epilepsy
with seizure-related disturbances and stressful situations,
should be an adjunctive treatment option where
and in 1 of the 2 educational programs58 that were both
resources allow.
rated LOE III. Therefore, the highest level of evidence per-
tains to mindfulness-based therapies as well as lifestyle rec-
ommendations that facilitated stress coping. These allow 3.6 | Anxiety
patients to notice and acknowledge their emotional pro-
Panic and generalized anxiety are more frequent in adults
cesses and physical symptoms related to their seizures, so
and older adolescents with epilepsy than in the correspond-
as to facilitate acceptance and coping.
ing general population and may have a marked negative
impact on HRQOL.117 In the assessment of anxiety disor-
3.5.2 | Psychological interventions for ders, clinicians need to consider the temporal relationship
seizure-related outcomes receive a GRADE of anxiety symptoms and seizures. This subsection focuses
recommendation of WEAK on interictal anxiety symptoms that may be related to a fear
of future seizures as well as fears of epilepsy-related conse-
The evidence is inconclusive, suggesting an important area
quences (psychosocial worries) and complications (such as
for future research. Whereas there is moderate- to high-
injury, brain damage, memory impairment). The anticipa-
quality evidence that mindfulness-based therapies and
tory anxiety about seizures may also take the form of sei-
lifestyle modifications that focus on improving HRQOL
zure phobia, which may lead to maladaptive avoidance and
produce a clinically meaningful effect on seizure frequency
isolation. It is, however, important to note that equally dis-
in individuals with epilepsy, there is also evidence that
abling anxiety symptoms (eg, social phobia, generalized
cognitive behavioral therapy–based interventions focused
anxiety) may also occur separately from seizure-related
on improving depressive symptoms do not have a clinically
worries and are also important to address.118 Perceived
meaningful effect on seizure-related outcomes in individu-
stigma is a risk factor for increased anxiety, which again
als with epilepsy (Table 6).
illustrates the interrelatedness of psychological issues.119,120

3.5.3 | Considerations for pediatric 3.6.1 | Evaluation of the evidence for

populations interventions for anxiety symptoms
The development of psychological seizure management
Only 1 RCT investigated a psychological intervention
techniques may have to involve an assessment of the
specifically aiming to decrease anxiety symptoms.82 Four
child’s family background and family dynamics.99 Because
studies investigating psychological interventions,77,78,86,87 1
parents and teachers may observe preseizure events, they
study investigating a self-management program,89 and 1
may be taught to reinforce stress reduction and other
study investigating an educational program55 measured
healthy behaviors.114,115
anxiety symptoms as a secondary outcome. Three stud-
ies55,86,89 were LOE II, and 1 study78 was LOE III,
3.5.4 | Specific clinical recommendations for whereas the remaining 3 studies were LOE IV.77,82,87 Of
seizure-related outcomes all LOE II studies, only the psychological intervention that
measured anxiety symptoms as a secondary outcome
Specific clinical recommendations for seizure-related out-
reported a significant decrease in anxiety symptoms.86
comes include:
Hence, the highest level of evidence pertains to the
 MICHAELIS
ET AL.

T A B L E 6 AAN LOE of studies investigating seizure-related outcomes

Primary Concealed Masked AAN LOE
Intervention Study Treatment method outcomes Secondary outcomes Blinding Randomization allocation assessment Attrition class
Psychological Au 2003113 CBT Seizure ? ↑ ↑ ↓ ↓ III
treatments frequency ↔
Ciechanowski 2010 Seizure ↑ ↓ ↓ ↓ ↓ II
& Chaytor 201175,76 frequency ↔
Dahl 1985114 Seizure ↑ ? ? ↑ ↓ IV
index ↓
McLaughlin 2011116 Seizure ↑ ↓ ? ? ↓ IV
frequency ↓
Tan 198688 Seizure ↑ ? ? ? ↓ IV
frequency ↔
Lundgren 2006109 ACT Seizure frequency ↓, ↑ ↓ ↓ ↑ ↓ IV
seizure index ↓
Lundgren 2008110 Seizure frequency ↓, ↑ ↓ ↓ ↑ ↓ IV
seizure index ↓
Li 201682 SFT Seizure frequency ↓ ? ? ? ? ? IV
86
Tang 2015 MT Seizure frequency ↓, ↑ ↓ ↓ ↓ ↓ II
SSI ↔
Psychoeducation May 200258 Psychoeducation Seizure frequency ↓ ↑ ↓ ↑ ↓ ↑ III
59
Rau 2006 Seizure frequency ↔ ↑ ↑ ↑ ↓ ↑ III

Seizure index = seizure frequency 9 seizure duration in seconds.

↑, significant increase/high risk of bias; ↓, significant decrease/low risk of bias; ↔, result was not significant/unclear risk of bias; AAN, American Academy of Neurology; ACT, acceptance and commitment therapy; CBT,
cognitive behavioral therapy; LOE, Level of Evidence; MT, mindfulness therapy; SFT, systemic family therapy; SSI, Seizure Severity Index.
|
1293
1294
| MICHAELIS ET AL.

implementation of mindfulness exercises that may facilitate those with temporal lobe epilepsy and drug-resistant epi-
the process of awareness, experience, and finally accep- lepsy.122,123 The details of cognitive assessment and train-
tance of feelings of anxiety. ing in epilepsy were thoroughly discussed in separate
recommendation statements.124 Instead of providing reha-
bilitation or training that targets objective cognitive deficits,
3.6.2 | Interventions for anxiety symptoms in
psychological treatments may aim at managing the interre-
epilepsy receive a GRADE recommendation of
lationship between mood, anxiety, and subjective cognitive
WEAK
complaints, which may not be reflected in objective evi-
The evidence is somewhat inconclusive, suggesting this is dence of cognitive impairment.125
an important area for future research. Although there is
moderate- to high-quality evidence that mindfulness-based
3.7.1 | Evaluation of the evidence for
interventions produce a clinically meaningful effect on anx-
interventions for neurocognitive disturbances
iety symptoms in individuals with epilepsy, several other
moderate- to high-quality studies did not demonstrate a Only 1 RCT investigated a psychological intervention
meaningful effect. Notably, in many of these interventions, specifically focused on cognitive symptoms (LOE III),85
anxiety was a secondary outcome (Table 4). and 1 other study86 measured cognitive functions as sec-
ondary outcome (LOE II). The highest level of evidence
pertains to a mindfulness-based training for individuals
3.6.3 | Considerations for pediatric populations with epilepsy, aiming to cultivate patients’ self-awareness
Many parents refer to the experience of their child’s first and focused attention. The completion of this treatment
seizure as traumatic, which may lead to anxieties concern- was associated with significant improvements in objective
ing the condition.57 As a consequence, children may measures of delayed verbal memory in patients with drug-
develop a fear of seizures by observing anxious parental resistant epilepsy compared to controls86; however, no
reactions.121 Psychological interventions that aim at allevi- changes were reported in other cognitive measures, includ-
ating anxiety in children may also have a secondary goal ing attention, nonverbal memory, and executive functions.
of addressing parents’ fear of seizures.114,115 Similar to A home-based self-management program (HOBSCOTCH)
depression, caregiver involvement in encouragement of incorporating psychoeducation, self-awareness training,
skill rehearsal is important for skill mastery in children. compensatory strategies, and cognitive training has been
developed and has been shown to be associated with sig-
nificant improvement in objective cognitive performance.85
3.6.4 | Specific clinical recommendations for
Using acceptance and commitment therapy tailored for
anxiety symptoms
individuals with epilepsy, Lundgren et al109,110 guided indi-
Specific clinical recommendations for anxiety symptoms viduals to develop a nonjudgmental acceptance of their
include: memory functions and refocused patients on the achieve-
ment of valued life goals despite the preconceived obstacle
1. Clinicians are encouraged to assess interictal anxiety of impaired cognitive functioning. In a controlled study
symptoms that may be related to a fear of future sei- (LOE IV), this intervention was found to be associated
zures and fear of epilepsy-related complications. with significantly improved HRQOL.109,110
2. Complex psychosocial worries, such as perceived
stigma, may exacerbate symptoms of anxiety, and
3.7.2 | Interventions for neurocognitive
should be evaluated and addressed.
disturbances in epilepsy receive a GRADE
3. The highest level of evidence pertains to the implemen-
recommendation of STRONG
tation of mindfulness exercises that may facilitate the
process of awareness, experience, and finally acceptance There is moderate- to high-quality evidence that mindful-
of feelings of anxiety. Therefore, health care providers ness-based interventions produce a clinically meaningful
are encouraged to refer patients with anxiety symptoms effect on neurocognitive disturbances in individuals with
for mindfulness-based interventions to alleviate their epilepsy.
anxiety symptoms.
3.7.3 | Considerations for pediatric
3.7 | Neurocognitive disturbances populations
Cognitive impairment can be associated with epilepsy and The prevalence of attention-deficit/hyperactivity disorder
adds to disability beyond seizures alone, particularly in (ADHD) is higher in pediatric epilepsy than in the general
MICHAELIS ET AL. | 1295

population, with rates of 30%-40% in children with epi- epilepsy are less likely to be well educated, to be
lepsy.126 There are very few studies examining the benefit of employed, and/or to have a romantic partner.133 They also
psychological interventions for children with epilepsy and experience social difficulties, including social isolation,
comorbid ADHD,127 and our search did not yield RCTs of social competence, and other social skills deficits.134 Fam-
psychotherapy for epilepsy and ADHD. Expert reviews on ily functioning, including communication, social support,
treatment of ADHD in individuals with epilepsy emphasize adaptation, mastery, and conflict, is often impacted by epi-
the need to address cognition.128 Moreover, the general child lepsy.135 Personal experiences with epilepsy may involve
literature has a strong evidence base for the efficacy of behav- perceived stigma, defined as a set of negative and often
ioral interventions in reducing ADHD symptoms in chil- unfair beliefs about something.136 Perceptions of stigma
dren.129 Given the comorbid learning disabilities and the can lead to concealment to avoid the anticipated negative
neurocognitive deficits common in children with epilepsy, it consequences of epilepsy disclosure in societies at all
is also important to discuss potential learning problems, pro- stages of economic development.120,137 Although the
vide access to resources (eg, educational interventions), com- strength of the perception of stigma may be associated with
municate with school personnel, and facilitate referrals for internal factors, such as low self-esteem,132 there are also
neuropsychological evaluations. Commercially available external factors, including cultural and religious differences
products have also recently been tested in epilepsy and may contributing to stigma.138 The extent to which indepen-
prove to be beneficial.130 A new Web-based executive func- dence and autonomy are encouraged also varies consider-
tioning intervention for adolescents is currently being tested ably between cultures. Regardless of these cultural
and may be one way to help youth with epilepsy overcome differences, epilepsy may result in significant restrictions in
cognitive skill deficits.131 an individual’s social functioning and independence, which
may be self-imposed or imposed by others.61
3.7.4 | Specific clinical recommendations for
neurocognitive disturbances 3.8.1 | Evaluation of the evidence for
interventions for social and family problems
Specific clinical recommendations for neurocognitive dis-
and stigma
turbances include:
Regardless of their primary outcome measure, most psycho-
1. Clinicians are encouraged to be aware of the interrela- logical treatments employ strategies to actively strengthen
tionship between mood, anxiety, and subjective cogni- the social network and build social support, to limit overpro-
tive complaints, which may not be reflected in objective tection or inappropriate dependence and enhance self-
evidence of cognitive impairment. responsibility, to improve communication, to encourage
2. Cognitive assessment and training may complement acceptance of the diagnosis, and to help patients deal with
mindfulness-based training aiming to increase patients’ emotional difficulties. Specific to the social domain, 1 LOE
self-awareness and focused attention. I psychological intervention study emphasized social
3. Several strategies can be built into psychological inter- skills,84 1 LOE II psychological intervention study focused
ventions for individuals with epilepsy with subjective on social activation,75,76 and 1 LOE II self-management
neurocognitive disturbances to enhance a sense of self- intervention focused on community integration and optimiz-
reliance. These techniques include incorporating written ing epilepsy-related communication.89 A LOE II interven-
handouts, joint reviews of the preceding sessions to tion incorporated family components into adherence and
reinforce memory for session content, shortening treat- utilized an outcome measure that included an aspect of fam-
ment sessions, and audio-recording sessions to enable ily functioning, parenting (child support, autonomy, disci-
the individuals to review the content between sessions. pline).104 LOE III and IV psychological interventions
Such techniques have been found to be beneficial.77 included assertion training,81 communication skills,77 identi-
4. In the absence of data to support the efficacy of behav- fication of social support,80 anger management,87 and moti-
ioral interventions tailored to children with epilepsy and vational interviewing.139 LOE II educational programs
ADHD, clinicians are encouraged to apply the evi- included information about social, family, and occupational
dence-based behavioral techniques supported in the gen- issues,53,55 and LOE III educational programs included con-
eral child literature. tent/skills for communication, self-responsibility, and self-
management,57 self-advocacy topics,62 coping,59,60 and
psychosocial and occupational issues.58 One LOE IV educa-
3.8 | Social and family problems and stigma tional program in Nigeria65 addressed specific cultural mis-
Having epilepsy may be associated with vocational, educa- conceptions about seizures and their treatment. Of note,
tional, social, and personal difficulties.132 Individuals with most of the interventions addressing family components are
1296
| MICHAELIS ET AL.

targeted toward pediatric patients and their caregivers, and

4.1 | Evaluation of the treatment delivery
none of the identified studies measured outcomes relating
and implementation modalities
explicitly to stigma.
A group setting used by itself or as an adjunct to individual
sessions not only may be more cost-effective than individ-
3.8.2 | Interventions for social and family
ual sessions, it also offers some unique advantages such as
problems and stigma in epilepsy receive a
group role modeling to practice skills and the solicitation
GRADE recommendation of STRONG
and exchange of individual experiences, perspectives, and
There is moderate- to high-quality evidence that psycholog- self-management strategies. Group interventions were
ical, adherence, and self-management interventions produce investigated by 1 LOE I psychological intervention study,84
a clinically meaningful effect on symptoms related to social 1 LOE II psychological intervention study,86 and 1 LOE II
and family problems and stigma. self-management intervention study.89 All of these studies
reported significant improvements in their primary outcome
measures. More than half of all investigated educational
3.8.3 | Considerations for pediatric
interventions were delivered in a group setting.55,57–59,62–65
populations
In addition to face-to-face delivery by trained health
Children and adolescents with epilepsy are at greater than professionals, telehealth options have been explored in 1
average risk of having increased dependence on parents.140 LOE II psychological intervention study79 investigating a
Parents are often overly restrictive and overprotective of Web-based treatment aiming to decrease depressive symp-
their children with epilepsy, which can influence social toms (Deprexis), 1 LOE IV Web-based self-management
growth and independence.141,142 program (WebEase),106 and 1 LOE IV Short Message Ser-
vice–based educational program (Mobile Epilepsy Educa-
tional System).61 Interactive engagement can be promoted
3.8.4 | Specific clinical recommendations for
by questions and quizzes79,106 or the opportunity to send
social problems and stigma
personal inquiries that are answered by program provi-
Specific clinical recommendations for social problems and ders,61 which allows for the personalized delivery of educa-
stigma include: tional materials (eg, tailoring). One LOE IV study80
investigated the telephone-based delivery of a psychologi-
1. Clinicians should inquire about the extent to which indi- cal intervention in a group setting. All of the aforemen-
viduals with epilepsy feel affected by interpersonal and tioned studies reported significant results regarding their
social problems, including problems affecting individu- primary outcome measures. Because limited access to psy-
als with epilepsy at their workplace, in school, or in chological treatments that are specifically designed to
their private lives. address the needs and concerns of people with epilepsy
2. This assessment may include evaluation of barriers to seems be the rule rather than the exception,143 telehealth
open communication about epilepsy to avoid anticipated modalities may help break down barriers to delivering psy-
negative consequences of disclosure. chological treatments in some resource-poor settings and
3. Treatment components should be incorporated that help facilitate treatment for individuals with active seizures
address internal factors contributing to social and family who live in areas with poor public transportation. Some
problems and stigma such as social and communication studies in pediatric epilepsy suggest that telehealth modali-
skills (eg, assertion training, training of epilepsy-related ties have similar outcomes and therapeutic alliance as face-
communication), social activation (eg, community inte- to-face interventions.144,145 A meta-analysis found no dif-
gration, identification of social support), and parenting ferences between face to face and telehealth in the general
skills. population.146 Similarly, home-based delivery of multi-
modal interventions may eliminate barriers and promote
collaboration between community/public health care profes-
4 | TREATMENT DELIVERY AND sionals and epilepsy specialists. One LOE II study75,76 and
SERVICE CONSIDERATIONS 1 LOE III study85 reported significant improvements in pri-
mary outcomes.
The described treatment elements may be delivered face to Optimal treatment implementation remains an ongoing
face or via telehealth technology (eg, computer, smart- area of development. Because the development of new
phone, tablet, telephone) in an individual or group setting skills and the formation of new habits require time and
or in a combination of these modalities. regular practice, most interventions aim to increase
MICHAELIS ET AL. | 1297

participants’ practice of relevant skills by embedding community/public health care professionals) and barriers
knowledge into treatment sessions spread out over time. (eg, poor public transportation).
Education protocols can, for example, either be delivered en 4. A group setting may be more cost-effective than indi-
bloc as a 2-day course or in a weekly format. Half of all vidual sessions and offer unique advantages (eg,
14 studies investigating educational programs53–55,61–63,66 exchange of individual experiences, elicitation of group
had chosen to deliver their interventions using at least 2 support and encouragement).
sessions that were at least 1 month apart. LOE I and II 5. Although it is beyond the scope of this paper to discuss
studies of psychological interventions and 1 self-manage- the differences in treatment implementation and delivery
ment intervention89 reporting significant primary outcome across cultures, we encourage the implementation of
results were implemented in at least 4 sessions86 that were basic elements of psychological interventions, including
delivered with a maximum frequency of weekly sessions84 education and self-help resources (including, eg, relax-
and a minimum frequency of 2-3 weeks between ses- ation CDs, seizure tracking devices).
sions.75,76 Depending on their primary treatment method, 6. Although providers and patients may wish to compress
these interventions included practice assignments between intervention content, they are encouraged to consider
sessions. Booster sessions following a more intense treat- the dose(s) of treatments suggested by the empirical lit-
ment period may increase skill retention.109,110 erature to permit sufficient scope for consolidating
change by including practice by participants between
sessions.
4.2 | Home-based, group-based, and
7. To decrease anxieties in nonmedical mental health care
telehealth intervention delivery in epilepsy
professionals over treating patients with seizures, a pro-
receive a GRADE recommendation of
tocol should be generated for individual patients, detail-
STRONG
ing how seizures that may occur during treatment
There is moderate- to high-quality evidence that home- sessions should be managed.
based, group-based, and telehealth-based treatments pro-
duce a clinically meaningful effect on a broad range of
symptoms in individuals with epilepsy, including suicidal 5 | TRAINING RECOMMENDATIONS
ideation and depressive symptoms, as well as HRQOL.
Mental health providers who have had extensive profes-
sional training in the delivery of psychological interven-
4.3 | Considerations for pediatric populations tions may have greater capacity to deliver psychological
Electronic and telehealth treatment modalities (eg, tele- treatment for people with epilepsy than epilepsy-specific
phone, computer, mobile health, electronic health) may be providers who have had very limited (if any) training in
particularly beneficial to families of children with epilepsy, providing noneducational psychological interventions. Med-
who must consider balancing the needs of the child with ical professionals such as epilepsy nurses are equipped to
epilepsy and other children, difficulty taking time off from provide educational and basic self-management interven-
work/school, et cetera to engage in psychological treatment. tions and can be equipped for other psychological interven-
Adolescents have a strong preference for technology and tions (cognitive behavioral, mindfulness) with specific
are thus also more likely to be amenable to telehealth treat- training (eg, psychiatric nursing degree, completed training
ment modalities.147 on a specific treatment protocol). Thus, we would recom-
mend the following:
4.4 | Specific clinical recommendations for
1. It is important to acknowledge that the required training
treatment delivery and implementation
for specific interventions depends on the professional
Specific clinical recommendations for treatment delivery background and expertise of the person delivering the
and implementation include: intervention, the nature of the treatment package, and
how well the treatment has been described and manual-
1. The described treatment elements may be delivered ized.
face-to-face in clinical settings or home-based, via tele- 2. A mental health professional delivering the intervention
health technology. elements should have basic knowledge regarding epi-
2. Psychological interventions can be provided individually lepsy, including etiology and classification of seizures,
or in a group format. treatment options, and psychopathology.26
3. Clinicians are encouraged to choose treatment delivery 3. Conversely, a medical professional delivering any psy-
modalities based on local treatment resources (eg, chological intervention elements should receive training
1298
| MICHAELIS ET AL.

in the administration of psychological interventions in publication by the ILAE. Opinions expressed by the
general as well as specific, detailed training in the authors, however, do not necessarily represent the policy or
implementation of the specific intervention protocol position of the ILAE. We thank Graham Chan from the
being administered. editorial team at Cochrane Epilepsy for supporting us with
4. Epilepsy-specific psychological interventions should the literature search and all related questions.
ideally be implemented by professionals in direct con-
tact with the diagnostician and the treating medical epi-
lepsy specialist. DISCLOSURE OF CONFLICT OF INTEREST
5. Some interventions, such as PEARLS, UPLIFT, and
MOSES/FAMOSES, offer and require the completion None of the authors has any conflict of interest to disclose,
of program-specific training prior to implementation, with the exception of L.H.G. This work represents indepen-
with variability in the extent and mode of dent research partially funded (R.M.) by the MAHLE
training58–60,75,76,80,83,148–150 to ensure the treatment is Foundation and the Integrated Curriculum for Anthropo-
delivered as intended. sophic Medicine. This work also represents independent
research partially funded (L.H.G.) by the National Institute
for Health Research (NIHR) Maudsley Biomedical
Research Centre at the South London and Maudsley
6 | CONCLUSION
National Health Service (NHS) Foundation Trust and
All patients should be screened for mental health comorbidi- King’s College London. The views and opinions expressed
ties, and patients with psychological symptoms should be are those of the author and not necessarily those of the
referred for further evaluation and treatment of indicated or NHS, the NIHR, or the Department of Health. We confirm
at-risk psychological symptoms. Evidence supports that psy- that we have read the Journal’s position on issues involved
chological therapies that target comorbid mental health in ethical publication and affirm that this report is consis-
symptoms and HRQOL should be considered in the compre- tent with those guidelines.
hensive treatment of individuals with epilepsy. The strongest
evidence was identified for the most common mental health
problems, including depression, as well as health behaviors, ORCID
such as adherence. Treatments for these disorders and chal-
Rosa Michaelis https://orcid.org/0000-0002-2577-0824
lenges received STRONG recommendations. Treatment pro-
Laura H. Goldstein http://orcid.org/0000-0001-9387-
tocols and training on the intervention techniques and
3035
delivery are available for many of the interventions dis-
Markus Reuber http://orcid.org/0000-0002-4104-6705
cussed. Few treatments have been evaluated with the same
William Curt LaFrance Jr. http://orcid.org/0000-0002-
rigor in children and adolescents compared to adults, and
4901-3852
we lack studies focusing on anxiety as an intervention target
and primary outcome. In addition, RCTs investigating psy-
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