Seizure: European Journal of Epilepsy: Sciencedirect
Seizure: European Journal of Epilepsy: Sciencedirect
Seizure: European Journal of Epilepsy: Sciencedirect
A R T I C LE I N FO A B S T R A C T
Keywords: Purpose: Psychogenic nonepileptic seizures (PNES) are one of the most common differential diagnoses of epi-
Conversion disorder lepsy. Our objective is to describe current medical care in Canada and identify patterns of practice and service
Functional seizures gaps.
Nonepileptic attacks Methods: In 2015, a 36-question survey was sent via email to the 131 members of the Canadian League Against
Pseudoseizures
Epilepsy. The questions were designed after literature review and discussion with the ILAE PNES Task Force.
Psychotherapy
Questions were separated into 5 sections: 1) the role of the respondent and their exposure to PNES, 2) diagnostic
methods, 3) management of PNES, 4) etiological factors, and 5) problems accessing health care.
Results: Sixty-two questionnaires were analyzed (response rate: 47%). Most respondents were epileptologists
(76%). The majority of respondents personally diagnosed PNES and communicated the diagnosis to the patient,
but only 55% provided follow-up within their practice and only 50% recommended or arranged treatment. Many
(35%) were either unfamiliar with the diagnosis of PNES or inexperienced in arranging or offering treatment.
Most (79%) provided follow-up to patients with concomitant epilepsy, but when PNES was the sole diagnosis
follow-up rates were low. Although 84% of respondents felt that individualized psychological therapy was the
most effective treatment, 40% of patients were not referred to psychotherapy and in most cases availability such
therapy was low (30–60%).
Conclusions: Canadian health professionals’ understanding of PNES mostly reflects current international expert
opinion. Once diagnosis is made however, the majority of patients are discharged from neurological services
without appropriate psychological care.
⁎
Corresponding author at: Division of Neurology, Department of Medicine, Royal University Hospital, 103 Hospital Drive, Box 26, Room 1622, Saskatoon, SK, S7N
OW8, Canada.
E-mail address: jose.tellez@usask.ca (J.F. Tellez-Zenteno).
https://doi.org/10.1016/j.seizure.2018.08.025
Received 14 May 2018; Received in revised form 27 July 2018; Accepted 31 August 2018
1059-1311/ © 2018 British Epilepsy Association. Published by Elsevier Ltd. All rights reserved.
A. Carter et al. Seizure: European Journal of Epilepsy 61 (2018) 227–233
incontinence or injury such as tongue biting during events. PNES are a [1,11,12].
very common phenomenon, cited as the third most frequent diagnosis
in seizure clinic patients [2]. The incidence is 1.4–4.9/100,000/year, 2.2. Data and analysis
and the prevalence is estimated to be 2–33/100,000 [3]. In many cases,
PNES are associated with significant disability: while previous studies Data were collected using the online software Survey Monkey,
suggest that PNES may remit in the short term with appropriate com- which provides anonymous collection of survey responses. Responses
munication of the diagnosis (up to 30% of cases), the long-term prog- were entered directly into the Survey Monkey database and were then
nosis is poor for most patients, especially in adults, with 70% remaining collated, reformatted and imported to SPSS version 21 (SPSS Inc.,
disabled several years after initial diagnosis [4]. Pediatric patients tend Chicago, Il, USA). Questionnaires on which less than 50% of the items
to have a higher response rate to treatment possibly related to the di- had been completed were excluded from the analyses. Descriptive sta-
agnosis being made earlier. Moreover, these episodes are often mis- tistics were used to assess frequencies and distributions. Open-ended
diagnosed and patients are at risk of receiving inappropriate medica- questions were reviewed for qualitative assessment. All analyses were
tions for prolonged periods or invasive interventions such as intubation performed using SPSS version 21.
and vagal nerve stimulation [5,6].
Neurologists are best placed within the medical community to di-
2.3. Ethics
agnose and arrange treatment for PNES, given their specialist training
in the differential diagnosis of epileptic seizures and their access to the
This cross-sectional study was led by the Epilepsy Program in
diagnostic gold standard: long-term video-EEG monitoring. The ques-
Saskatchewan, Canada. The biomedical research ethics board at the
tion who should provide treatment is more difficult to answer. Most
University of Saskatchewan approved this study. Signed informed
PNES fulfill the diagnostic criteria of a psychological conversion or
consent was not required because clinicians were not providing con-
dissociative type disorder. Many patients with PNES have psychiatric
fidential health information.
comorbidities, suggesting that psychiatrists may play an important role
in further diagnostic assessment and treatment [7]. Although no evi-
dence-based management guidelines exist at present, there is evidence 3. Results
that psychological treatment is indicated and effective for many pa-
tients with this disorder [8]. Such treatments would usually be provided 3.1. General data
by psychotherapists or psychologists. However, many psychiatrists,
psychologists and psychotherapists only have limited experience with The survey response rate was 47% (62/131). All sixty-two ques-
the management of patients with PNES. tionnaires were included in the data analysis. All respondents were fully
Common practices employed by experts in Canada must be identi- trained. The majority (76%) of respondents were young male epi-
fied in order to be used as a basis for implementing guidelines for leptologists (Table 1). Fifty-eight percent of survey respondents were
physicians diagnosing and managing PNES. The International League between 31 and 50 years old. All respondents treated both hospital
Against Epilepsy (ILAE) has recently created an international PNES
Task Force to describe current treatment practices and identify service Table 1
gaps around the world [9,10]. Our objective in this paper is to focus on General information of the participants (n = 62).
responses to an ILAE survey from Canada, and to describe current Age (years)
management in this country, while identifying heterogeneity in practice 21–30 2 (3.2)
styles and service gaps, in order to provide a basis for a future stan- 31–40 16 (25.8)
41–50 20 (32.3)
dardized management approach.
51–60 11 (17.7)
61–70 8 (12.9)
2. Methods 71–80 5 (8.1)
Sex
2.1. Questionnaire Male 41 (66)
Female 21 (34)
In 2015 an internet survey was sent to all members of the Canadian Province
League Against Epilepsy (CLAE) by email. A web-based survey was Ontario 23 (37)
administered to have the broadest reach. The CLAE had 131 members Saskatchewan 9 (14.5)
Alberta 9 (14.5)
at the time of the survey. Potential recipients included adult and pe-
Quebec 7 (11.2)
diatric neurologists, epileptologists, psychiatrists, neuropsychiatrists, Nova Scotia 6 (9.6)
psychologists, neuropsychologists, nurses, neurosurgeons, social British Columbia 5 (8)
workers, and EEG technologists. Manitoba 3 (4.8)
The questions were designed after literature review and discussion Specialty
with PNES Task Force of the ILAE. This survey was designed with the Epileptologist 47 (75.8)
intent of quantifying common practices regarding PNES in Canada. General neurologist 4 (6.5)
Neuropsychologist 4 (6.5)
Questions were separated into 5 sections: 1) the role of the respondent
EEG technologist 3 (4.8)
and their exposure to PNES, 2) diagnostic methods, 3) management of Epilepsy nurses 2 (3.2)
PNES, 4) etiological factors, and 5) problems accessing health care. The Psychiatrist or Neuro-Psychiatrist 2 (3.2)
questionnaire consisted of 36 questions. Thirty-one questions offered Patients attended
predefined choices; five were open-ended questions. The response Children (aged 0–18) 27 (43.5)
format was categorical for close-ended questions (i.e. multiple-choice Adults (aged 19–74) 50 (80.6)
format) and “check the answers that apply” format for lists Elderly patients (75 and older) 39 (62.9)
Patients with intellectual disability 53 (85.5)
(Supplementary Material—Appendix A). The survey required
10–20 min to complete. A panel of experts in neurology and psychology Time to travel to the appointment (hours)
Up to 1 24 (38.7)
reviewed and tested the survey to evaluate the content, the flow, and
1–2 27 (43.5)
the format of the questions. The questions in the survey were inspired 3–4 10 (16.1)
by similar surveys carried out previously in the UK, the USA and Chile
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A. Carter et al. Seizure: European Journal of Epilepsy 61 (2018) 227–233
inpatients and outpatients; the majority of participants were publicly investigations for determining a diagnosis of PNES. Ninety percent of
funded (96%). Only 8% of respondents worked in community-based respondents had access to routine outpatient video-EEG monitoring and
programs. 89% had access to prolonged inpatient video-EEG (more than 8 h).
Eighty-nine percent had access to computed tomography (CT) scan and
3.2. PNES diagnosis and treatment 95% had access to brain magnetic resonance imaging (MRI).
About half (53%) of respondents reported 80–90% of their current
Seventy-seven percent (48/62) of respondents diagnosed 1–20 new patients had received the “gold standard” in PNES diagnosis (video-EEG
cases of PNES annually, while only 27% of respondents followed 1–5 recording of a typical attack), while a minority (24%) reported 100% of
cases currently in their practice. The majority of respondents (87%) patients in their practice had been diagnosed in this manner. While the
personally diagnosed PNES and communicated the diagnosis to pa- majority of PNES patients had undergone psychiatric evaluation (72%)
tients. Only 55% provided follow up within their practice and ap- or referral for psychological assessment (60%), less than half had re-
proximately 50% recommended or arranged treatment (Fig. 1). ceived psychotherapeutic assessment (49%) or neuropsychological
With regards to respondents’ confidence and familiarity with the testing (41%).
diagnosis and treatment of PNES, 65% felt confident in their ability to
diagnose PNES and did so often (90% were epileptologists). Another 3.5. Communication and follow-up
31% (19/62) felt that they were confident in their ability to distinguish
between PNES and epilepsy, but made the diagnosis only occasionally. Ninety-seven percent of respondents reported that the neurologist
Although 58% of participants answered they knew how to arrange or first communicated diagnosis of PNES to the patient. One respondent
provide treatment for patients with PNES, only 14.5% replied they were reported that neuropsychiatry initially provided the diagnosis. The di-
well informed or sufficiently familiar with psychotherapy to know how agnosis was frequently (95.2%) communicated via face-to-face ex-
this treatment might help patients with PNES. The majority of partici- planation to the patient. Eighty percent of neurologists also attempted
pants (76%) said that they knew about psychotherapy in theory but to explain the diagnosis to family members (if present), and 40% sent
could not describe what it involved or how it might work in patients letters to another healthcare practitioner when needed. The provision
with PNES. Many (35%) were either unfamiliar with the diagnosis and of leaflets (19%), referrals to websites (18%) and self-help groups (8%)
treatment of PNES or were inexperienced in arranging treatment. was not common practice. Respondents endorsed sixteen different
statements as approaches they use when explaining the diagnosis of
3.3. Etiologies of PNES PNES in their usual practice. The majority of respondents (77%) re-
ported that they explained PNES as “complex episodes with predis-
The majority (86%) of health professionals reported seeing PNES posing, triggering and perpetuating factors, stress being one of the main
more often in women than men. Respondents felt that the most relevant triggering factors (68%)”. They often clarified that the episodes are
factors in the emergence of PNES were childhood physical abuse (42%), involuntary (71%) and that anti-epileptic drugs are of no benefit (76%)
physical neglect (39%) and sexual abuse (37%), followed by co-morbid (Fig. 2). Sixty percent (37/62) of respondents offered patients at least
psychiatric conditions such as anxiety (41%), accumulated life stress one follow-up appointment after the diagnosis was initially explained.
(39%) and depression (38%). Factors such as family conflict (32%), Most (79%) provided follow-up to those patients with concomitant
epilepsy diagnosis (32%), personality disorders (30%), bullying (23%) epilepsy and about half (55%) followed up with patients undergoing
and poverty (22%) were also considered important. Other possible anti-epileptic drug withdrawal. For all other reasons, however (e.g.
factors related to PNES proposed by eight participants (13%) were in- mental health problems, awaiting treatment), follow-up rates were ra-
tellectual disability, medical background/training, witnessing seizures ther low (13–42%) (Fig. 3).
in others (family or friends), mourning, loss of financial power, post-
traumatic stress disorder and seizure freedom after having epilepsy 3.6. Treatment
surgery. Typically, the comorbid psychiatric conditions develop and
persist into adulthood after chronic childhood trauma. Eighty-four percent of respondents felt that individualized psycho-
logical therapy was the most effective treatment and that 75% of PNES
3.4. PNES services patients would receive a referral to at least one psychology appoint-
ment. However, the respondents stated that the availability of psy-
Most respondents (> 70%) had access to appropriate medical chotherapy in Canada is limited (private system 58%, public system
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A. Carter et al. Seizure: European Journal of Epilepsy 61 (2018) 227–233
76%). Ultimately, respondents estimated that the majority of their pa- Table 2
tients received education from the neurologist (88%) and/or anti- PNES treatment knowledge and access in Canada (n = 62).
depressants (79%), while only 60% received psychotherapy (Table 2). N (%)
The wait list for psychotherapy was reported as variable in different
areas, being around 1 to 30 months. Lack of psychological treatment The most effective treatment (according to the participants)
services (34%), lack of money for psychotherapy (30%) and lack of Cognitive Behavioural Therapy 52 (83.9%)
Antidepressant drugs 3 (4.8%)
popular awareness of PNES (35%) were perceived as the most common Group psychotherapy 2 (3.2%)
difficulties in accessing diagnostic and treatment services reported by Hypnosis 1 (1.6%)
respondents (Table 3).
Availability of psychotherapy in the area
Psychotherapy is not available in the area 1 (1.6%)
Psychotherapy is available for private patients 36 (58.1%)
4. Discussion
Psychotherapy is available for publicly insured patients 47 (75.8%)
Psychotherapy is available via telemedicine/ internet-based 11 (17.7%)
To our knowledge, this is the first Canadian study assessing health services
services and attitudes of health professionals towards PNES. We ob-
served a good geographic distribution of responses across seven pro- Access to the treatment Mean (%) ± SD Relevancea
vinces of Canada. Our response rate (47%) was significantly higher than
Education (explaining the patients ± their family 88.39 ± 24.37 High
those of similar studies in the UK (8.6%) and the USA (18%) [1,11]. A about the diagnosis)
study in Chile reported a similar response rate (45%) to ours [12]. The Support groups 33.39 ± 28.85 Moderate
majority of respondents in our study were fully trained, young epi- Individual psychological treatment (Cognitive 60.16 ± 31.54 Moderate
leptologists mostly caring for public system patients. This is consistent Behavioural Therapy)
Psychological group treatment 38.39 ± 29.09 Moderate
with results from a recent ILAE Task Force publication that found re-
Psychological family therapy 33.71 ± 29.6 Moderate
spondents across 28 high-income countries to be primarily specialized Inpatient treatment (including psychotherapy, 31.29 ± 36.59 Moderate
doctors (neurologists with special interest in epilepsy) (70%) [10]. rehabilitation)
The majority of neurologists encountered PNES on a regular basis Antidepressant drugs 78.55 ± 32.02 High
and personally made and/or communicated the diagnosis to patients Antipsychotic drugs 69.35 ± 39.78 Moderate
Anti-epileptic drugs 65.32 ± 42.6 Moderate
and their families. In contrast, only half of respondents followed pa- Beta-blockers 59.52 ± 45.85 Moderate
tients until episodes were well-controlled. This finding is similar to the Benzodiazepines 62.58 ± 42.46 Moderate
results reported in the UK (50%), in Chile (27%) and the USA (39%) Occupational therapy 40.32 ± 36.66 Moderate
[1,11,12]. The finding also reflects international trends where 20% of a
High relevance ≥ 70%, moderate relevance 31–69%, low relevance ≤
respondents from high-income countries reported not following pa- 30%.
tients beyond diagnosis [10]. Overall, it appears to be common practice
that once a neurologist has made the diagnosis, patients are often
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A. Carter et al. Seizure: European Journal of Epilepsy 61 (2018) 227–233
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A. Carter et al. Seizure: European Journal of Epilepsy 61 (2018) 227–233
suggest continued neurological follow-up for at least six months fol- guidelines.
lowing diagnosis to ensure successful transition of patient care to a
psychiatric service [22]. Acknowledgements
An interesting finding in our cohort was the common prescription of
psychotropic drugs. Our cohort reported prescription of antidepressants Dr. Tellez-Zenteno receives grants from the University of
(79%), antipsychotic drugs (69%), benzodiazepines (62%), and beta- Saskatchewan, the Royal University Hospital Foundation in Saskatoon,
blockers (59%), despite the fact that the evidence for the use of such Saskatchewan, through the Mudjadik Thyssen Mining Professorship in
drugs in patients with PNES is very limited. This is clearly in contrast Neurosciences and UCB Canada.
with the practice in other countries. In the UK, 50% of respondents
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