YEBEH-04250; No of Pages 8 Epilepsy & Behavior xxx (2015) xxx–xxx
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Standard medical care for psychogenic nonepileptic seizures in Brazil Kette D. Valente a,b,⁎, Patricia Rzezak a,b, W. Curt LaFrance Jr. c a b c
Laboratory of Neuroimaging in Neuroscience (LIM 21), University of São Paulo (USP) School of Medicine, São Paulo, SP, Brazil Laboratory of Clinical Neurophysiology, Psychiatry Department, University of São Paulo (USP) School of Medicine, São Paulo, SP, Brazil Neuropsychiatry and Behavioral Neurology, Rhode Island Hospital, Brown University, Providence, RI, USA
a r t i c l e
i n f o
Article history: Received 8 December 2014 Revised 3 February 2015 Accepted 24 February 2015 Available online xxxx Keywords: Nonepileptic seizures Diagnosis Video-EEG Treatment
a b s t r a c t Knowledge about health systems can promote implementation of more specific and strategic health practices for patients with psychogenic nonepileptic seizures (PNES). For this purpose, we surveyed the current management of PNES (standard medical care [SMC]) by Brazilian League Against Epilepsy members. Respondents reported diagnosing PNES with a mean frequency of 3 patients/month. Video-EEG (vEEG) was considered the best method for the diagnosis. Respondents who have vEEG in their facilities refer to vEEG significantly more often than those who have no vEEG (p b 0.001). Therefore, South and Southeast Brazil regions referred patients more frequently to vEEG than other regions (p = 0.004). Psychotherapy was considered the most effective (92.2%) treatment option, followed by education (75%) and psychopharmacology (70.3%). There were no regional differences considering treatment. The study identified current national diagnostic and treatment practices across the country and identified relevant Brazilian regional differences. © 2015 Elsevier Inc. All rights reserved.
1. Introduction Psychogenic nonepileptic seizures (PNES) represent a universal human condition, and are recognized as a worldwide phenomenon [1]. Multiple cross-cultural descriptions of patients' demographics, semiology, and coexisting neurological and psychiatric disorders suggest that there are many similarities, unrelated to cultural and economic differences [2–4]. Only one previous study provided a direct comparison between health-care providers (HCP) from two countries, in this case, Chile and USA [5]. This study showed differences in the diagnosis and treatment of PNES that were deemed to be related to the health-care system and professional medical attitudes. The Brazilian Health System has particularities distinct from other South American countries, such as Chile, that notably influence health care; care is distinctly divided into private and public sectors. It is estimated that the public sector serves approximately 75% of a population of almost 200 million Brazilians, representing the largest public system in the world [5]. The public system is divided into primary, secondary, and tertiary care centers, stratified in a hierarchical model. Tertiary care facilities, as opposed to primary care centers, are assigned complex cases [5]. Another particularity is that tertiary care facilities are not equally distributed across distinct Brazilian regions, with a lower concentration in North and Northeast regions [5]. This system is distinct from other systems in South America, and for this reason, the authors ⁎ Corresponding author at: University of São Paulo, Laboratory of Clinical Neurophysiology, Psychiatry Department, R. Dr. Ovídio Pires de Campos, 785 Caixa Postal 3671, CEP 01060-970 São Paulo, SP, Brazil. E-mail address: [email protected] (K.D. Valente).
postulated that some regional differences would be observed in medical practice and care for patients with PNES in Brazil. Knowledge about differences between health systems and HCP can promote implementation of more specific and strategic health practices for patients with PNES in Brazil and other countries. In addition, with practice knowledge, more effective strategies for diagnosis, referral, and treatment for PNES could be delineated. For this purpose, we surveyed and reported the current management of PNES standard medical care (SMC) by HCP of the Brazilian League Against Epilepsy (BLAE). 2. Methods 2.1. Study design The PNES SMC questionnaire developed by LaFrance et al. [6] was administered to the BLAE members. The survey was available from June to August of 2014. Four emails with a link to the web survey were sent to this sample during this period. The PNES SMC practices questionnaire was designed to quantify the approaches to diagnosis and treatment of PNES. 2.2. Questionnaire design A Brazilian physician, with proficiency in both languages, translated the original PNES SMC questionnaire from English to Portuguese. Then, a native-English-speaking teacher with proficiency in English and Portuguese back-translated the questionnaire. The back-translated version was then compared with the original translation by the authors who identified words that did not reflect the original meaning and that
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Please cite this article as: Valente KD, et al, Standard medical care for psychogenic nonepileptic seizures in Brazil, Epilepsy Behav (2015), http:// dx.doi.org/10.1016/j.yebeh.2015.02.032
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thus, needed a semantic adaptation. The final questionnaire was rechecked (WCL) and implemented using Survey Monkey. The survey was comprised of 20 items assessing the diagnostic and treatment practices for PNES. For further survey development information, readers are directed to the original survey article [6].
2.3. Data collection and preparation Responses were entered directly into a Survey Monkey database. Data from the email survey were collected with the compilation software from Survey Monkey, which provides anonymous collection of survey responses. Data were reformatted and imported into Stata version 12.0. In all surveys, more than 50% of responses were completed. Based on this criterion, no survey had to be excluded from the final analyses. 2.4. Analysis plan Frequencies and percentages were tabulated for the categorical variables. Continuous variables were reported as means and ranges. The open-ended questions were reviewed for qualitative assessment, and significant themes are noted in the Results. A chi-square or a Fisher chi-square analysis was used to evaluate a possible difference between respondents according to the Brazilian region in which they practiced. Type I error (alpha) was set highly conservatively, at 0.005, to correct for multiple analyses (Bonferroni's correction of 0.05/10 analyses).
3. Results Response rate was calculated as the proportion of sent surveys that were returned. Out of 380 BLAE registered members, 235 had valid email addresses (correct usernames and active servers). Sixty-eight (29%) members answered the survey. Given that not every respondent answered all 20 questions, percentages are reported based on the number of respondents who answered the specific question. One participant was excluded from further analysis because he/she was located outside the country.
3.1. Demographics The distribution of respondents' careers is illustrated in Fig. 1. The majority of the respondents were epileptologists (n = 31), followed by people with unspecified careers (n = 17) and nonepileptologist neurologists (n = 15). Seven (41%) out of 17 professionals classified with unspecified careers were child neurologists. Neuropsychiatrists, neuropsychologists, and psychiatrists accounted for the remaining 12.2% of the respondents. The distribution of respondents' practice locations is shown in Fig. 2. The majority of the respondents were from the Southeast area of Brazil (40/68 [60%]). 3.2. Frequency of making the diagnosis of PNES Respondents (n = 64) reported a frequency of making 3.3 PNES diagnoses per month (range: 1–15 diagnoses/month). Forty-five respondents reported making five or fewer PNES diagnoses per month. Fifteen (31%) respondents reported making b1 PNES diagnoses per month. There was no difference when comparing distinct regions (South and Southeast compared to others) (p = 0.726). 3.3. Diagnostic methodology Routine EEGs were performed at 52 of 67 (78%) respondent practice locations, and video-EEG (vEEG) was performed at 33 (49%) of the practice locations. Thirty-eight (59%) out of 64 respondents reported using vEEG/long-term monitoring (vEEG/LTM) as the most frequently used method to diagnose PNES. Twenty respondents (31%) reported routine EEGs as the next most frequently used technique. Fourteen respondents (22%) reported using history and exam alone, and 12 (19%) choose outpatient EEG without video to make the diagnosis of PNES (see Fig. 3A). Thirty-one (49%) respondents reported using provocative methods to aid diagnosis. Neurologists, nonneurologists, epileptologists, and nonepileptologists equally answered that vEEG was the best method for the diagnosis (p = 1.000) (Figs. 3B and C). Respondents who have vEEG in their facilities
Fig. 1. Respondent careers (n = 68) [in percentage].
Please cite this article as: Valente KD, et al, Standard medical care for psychogenic nonepileptic seizures in Brazil, Epilepsy Behav (2015), http:// dx.doi.org/10.1016/j.yebeh.2015.02.032
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Fig. 2. Respondent practice locations in Brazil (n = 68).
refer to vEEG more often than those who have no vEEG (p b 0.001). Thirty-one (94%) of 33 clinicians with access to inpatient vEEG reported referring to inpatient vEEG, compared to only seven (21%) of 35 clinicians without direct access to vEEG who referred to inpatient vEEG (p b 0.001). Thirty-three (88%) respondents had vEEG in their center. Twentyeight (55%) respondents in the South/Southeast regions and 5 (25%) respondents in other regions had vEEG in their facilities. The respondents in the South and Southeast regions referred patients more frequently to vEEG than other regions (p = 0.004).
neuropsychiatrists (8%) (Fig. 6). Fifty (79%) respondents reported that the neurologist does not stop seeing the patient with PNES. The rationale shared with patients for a nonneurologist referral, keywords, and specific themes of the responses were assessed qualitatively and quantitatively. The majority of respondents emphasized that the episodes were from an emotional origin and thus, should be treated by psychiatrists and psychologists. Several addressed the fact that AEDs were not effective for these types of episodes.
3.4. Communication of information
Thirty-five of 63 (56%) respondents recommended tapering AEDs in lone PNES, and 68% (43/63) of the respondents recommended initiating psychotropics. Psychotherapy was considered the most effective (92%) treatment option, followed by education (relaying information about the disorder to the patient and family members [75%]) and psychopharmacology (70%) (Fig. 7). An open-ended question queried strategies thought to increase the likelihood that patients would follow through with referrals to psychiatrists and psychologists. Several respondents emphasized that neurologists should continue following patients after the PNES diagnosis. Other frequent themes were the following: (i) the relevance of a clear conversation during the diagnostic process with patient and family when the neurologist should state that PNES is a disorder with serious health implications; (ii) the psychiatrist/psychologist is the best professional to address the patient's condition; (iii) mental health professionals should be available in the same institution where the patient received his/her diagnosis; (iv) the importance of family support; and (v) psychopharmacology can be a useful tool. There were no regional differences considering psychoeducational measures (p = 0.352), psychotherapy (p = 0.385), and psychopharmacology (p = 0.287).
Fifty-seven of 63 respondents (90%) reported that they discuss the diagnosis of PNES with patients, and 59 (94%) reviewed the diagnosis with families of patients with PNES. 3.5. Terminology The term most often used to describe patients' events is nonepileptic seizures (64%), followed by psychogenic seizures (17%) and seizures with emotional origin (9%). Of the 68 respondents, 7% still use the term pseudoseizures (Fig. 4). 3.6. Etiology Information given as etiology of PNES revealed that trauma or abuse was the most frequently communicated category (22%), followed by anxiety and unknown mechanism (both with 15%), and social (11%) or emotional stressors (10%). Several respondents attribute the episodes to a range of potential convergent mechanisms, depending on the patients' particular circumstances and presentation. Of note, 14% of the respondents reported that they do not provide any possible etiology for patients' episodes (Fig. 5).
3.8. Treatment
4. Discussion 3.7. Disposition The majority of respondents give a recommendation for treatment (78%). Referral to psychiatrists was reported most often (84%), followed by referrals to clinical psychologists (61%). A smaller number of respondents referred their patients to neuropsychologists (9%) and
To our knowledge, this is the first nationally administered survey of Brazilian clinicians aiming to determine the services and treatments offered to persons with PNES. The study identified current diagnostic and treatment practices across the country and identified regional differences, as discussed below.
Please cite this article as: Valente KD, et al, Standard medical care for psychogenic nonepileptic seizures in Brazil, Epilepsy Behav (2015), http:// dx.doi.org/10.1016/j.yebeh.2015.02.032
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Fig. 3. (A) Diagnostic methods used by all provider types (n = 67) [in percentages]. Respondents selected all methods available in their centers. (B and C) Diagnostic methods used by epileptologists and nonepileptologists. Respondents (n = 64) selected all methods available in their centers.
4.1. Demographics Brazil is geopolitically divided into five regions, created according to physical, political, social, and economic similarities. Although all regions were represented, the respondents' distribution was uneven. The higher number of respondents (60%) in the Southeast region can be partially explained by the fact that 40% of the Brazilian population is concentrated in this part of the country. In addition, epilepsy tertiary care centers are mostly located in the Southeast, South, and Central west regions. Therefore, the number of specialists is higher compared to other regions. In this context, this survey is representative of the Brazilian care system for PNES [5]. This survey was directed to the BLAE members, and it is not surprising that most respondents were neurologists (78%), especially epileptologists (46%), which is representative of the most frequent professional careers of the BLAE. This represents a valuable piece of
information, since neurologists are often the first line in PNES diagnosis, communication, and treatment referral [7]. Furthermore, epileptologists are often referred to as a source of education about PNES for students and other professionals. Another indicator of this survey addressing an appropriate sample is that respondents had frequent contact with these patients, with a mean of 3 PNES diagnoses per month.
4.2. Diagnosis Video-EEG/LTM is the gold standard method for the diagnosis of PNES [8–10]. This is a well-accepted concept by BLAE members, considering that vEEG was the most used method for the diagnosis (59%). Respondents without vEEG rely on history (22%) and refer to EEG with provocative measures (49%), since routine EEG is available to most Brazilian respondents (N70%).
Please cite this article as: Valente KD, et al, Standard medical care for psychogenic nonepileptic seizures in Brazil, Epilepsy Behav (2015), http:// dx.doi.org/10.1016/j.yebeh.2015.02.032
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Fig. 4. Terminology used by respondents (n = 68) [in percentage].
The fact that vEEG is often requested when it is available in the respondents' center showed that access plays a major role when considering PNES diagnosis and treatment gaps, as stated by others [11].
4.3. Communication Communication of the diagnosis seems to have an effect reducing unnecessary health-care utilization and iatrogenic measures [12–14]. The vast majority of respondents reported discussing the diagnosis with patients and their families. In agreement with previous data, the majority of neurologists accept that the explanation of PNES is part of their role [6,11,15]. Why Brazilian respondents identify the family as an important part of this process was not queried in this survey. There are some possible reasons: (i) family is recognized as an etiological factor — family dysfunction [7,16,17]; (ii) based on the authors' experience (KDV; PR), family engagement in the diagnosis and treatment of
chronic diseases is part of the Brazilian culture; and (iii) family support promotes understanding of the diagnosis [9,18] and supplies a supportive social network [19]. It is also important to remember that approximately 10% of the respondents were child neurologists. In this scenario, the communication for family is essential, especially for children in younger ages.
4.4. Terminology As in prior surveys [7,11,14], the most used term reported was “nonepileptic seizures” (64%). The next most used term was “psychogenic seizures” (17%), followed by “seizures with emotional origin” (5%). It must be stressed that the term “psychogenic nonepileptic seizures” — the most widely accepted and used in literature — was not part of the possible answers, mirroring the fact that it was not included in the original SMC survey. In this context, it is not feasible to
Fig. 5. Etiology of PNES given by respondents (n = 49) [in percentage]. Some respondents selected more than one category.
Please cite this article as: Valente KD, et al, Standard medical care for psychogenic nonepileptic seizures in Brazil, Epilepsy Behav (2015), http:// dx.doi.org/10.1016/j.yebeh.2015.02.032
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Fig. 6. Treatment referral providers [in percentage]. Respondents (n = 64) could select more than one category.
determine if respondents would have chosen this term over the term “nonepileptic seizures”. The term pseudoseizure, which is not advised because of its stigmatizing character, was used by only a small percentage of the respondents (7%), which may reflect the growing knowledge about the importance of appropriate terminology in the communication process and how it must be utilized. 4.5. Etiology Trauma/abuse, anxiety, and unknown causes were almost equally identified as possible etiologies of PNES. In the original US survey, the most common etiological factors shared for PNES were environmental stressors and trauma/abuse [7], and in Chile, anxiety and unknown causes were shared as etiological factors. Brazilian epileptologists identified trauma and abuse as more representative than environmental stressors. These disparities may represent the nature of cross-cultural understanding of PNES. It is of note that none of the Brazilian respondents identified PNES as a purposeful behavior, possibly identifying a growing understanding of the unconscious contributors to conversion disorder seizures.
4.6. Treatment Most respondents (78%) reported referring patients with PNES to psychiatrists and psychologists for treatment. This is in agreement with current statements on the management of PNES [9,20] and emphasizes the importance of psychotherapy, which is the most validated approach to treat PNES [21]. How many patients actually have access to these treatments, especially to psychotherapy, was not queried in this survey. Brazilian respondents considered educational measures and psychopharmacology equally important. This finding may possibly represent the erroneous assumption that patients simply need to understand the meaning of PNES following communication [22]. Currently, educational measures play a major role, representing the first step for further engagement in treatment [23]. Pharmacology was rated as important in this survey. This may reflect the difficulty in obtaining treatment with a psychiatrist and psychotherapy. In this case, the neurologist may feel the professional obligation to treat psychiatric comorbidities. The reasons why neurologists continue to follow their patients were not surveyed; however, it is in agreement with previous studies that recognize that this follow-up is important [22,24]. Ongoing involvement
Fig. 7. Effective treatment [in percentage]. Respondents (n = 64) could select more than one category.
Please cite this article as: Valente KD, et al, Standard medical care for psychogenic nonepileptic seizures in Brazil, Epilepsy Behav (2015), http:// dx.doi.org/10.1016/j.yebeh.2015.02.032
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of the neurologist who makes the diagnosis or who follows the patients is important to reinforce the diagnosis for patients and for psychiatrists who receive this patient. It is not unusual for psychiatrists to question the diagnosis of PNES [25]. Although it is common knowledge that AEDs do not treat PNES and reinforce the diagnosis of epilepsy, 44.4% of the respondents do not taper AEDs in lone PNES following the diagnosis. This may represent physicians' uncertainty about the diagnosis of possible epilepsy, lack of knowledge of PNES treatment, or fear of relapses. It is also possible that epileptologists are aware of the limitations of vEEG [7] and the fact that some Brazilian respondents had to rely on history and EEG. The time between diagnosis and treatment referral with a psychiatrist represents a gap of time, and neurologists may feel the need to treat their patients in the interim [26,27]. Two distinct needs are present: neurologists who want to provide some treatment for their patients and patients' fear about “lack of treatment” after the diagnosis. 4.7. Comparison with practices in diagnoses and treatment: interand intradifferences Brazilian respondents reported seeing a higher number of patients with PNES, when compared to previous surveys with UK and Chilean neurologists [15]. The rate is comparable to the US [10], but the reasons for this similarity may differ. The limited number of epilepsy tertiary care centers in Brazil, compared to the US, may lead to a frequent referral of patients with PNES to these centers [28]. Neurologists across the world favored the term nonepileptic seizures over others. The term “dissociative events” was not used by the respondents, and it may reflect the fact that a low number of psychiatrists/psychologists answered the survey, compared to previous surveys in the US [4] and UK [11]. A survey administered to Brazilian psychiatrists would be of interest to examine possible differences in this approach. 4.7.1. Diagnoses The use of vEEG to diagnose PNES differs across continents [15]. The diagnosis of PNES was made by inpatient vEEG in 89% of the responding US epilepsy centers, for 72.5% of the clinicians in the UK, and by 25% of the responding Chilean epilepsy centers [11,15]. The diagnosis of PNES was made by history and exam alone at twice the rate in Chile (38%) than in the USA (16%) [4,5]. There were significant intracontinent differences when Brazil (59.4%) and Chile are compared according to vEEG use. It is of note that although Chile and Brazil are South American countries with economic and social similarities, several survey questions were answered differently, and probably this may differ even more if administered in other South American countries. In a regional analysis, comparing distinct Brazilian regions and acknowledging distinct environments, we observed that neurologists in the South and Southeast regions refer patients to vEEG more often than their counterparts in the North, Northeast and Central west regions that have more limited access to this method. This is in line with the idea that the use of vEEG is strongly related to the access to this method [29]. 4.7.2. Treatment Referral to psychiatrists was comparable to US and Chilean respondents. Brazilian respondents, however, referred to psychiatrists more often than UK respondents. On the other hand, the referral to psychologists and the number of neurologists who continue following patients is similar to what was documented in the UK, but higher than that in the US and Chile. Responses regarding AED discontinuation and prescribing psychoactive drug survey are very similar to those observed in Chile, with lower rates of AED withdrawal and higher rates of psychoactive drug prescription compared to the US and UK.
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The lack of access to adequate therapy after referral may justify why psychoactive drugs are prescribed more often and AEDs are withdrawn less often. This treatment gap between the moment of diagnosis, communication, referral, and proper therapy may also justify the ongoing follow-up of neurologists, which is very high in some countries. Differences in practice are not restricted to a division between developing and developed countries, as demonstrated by the UK survey. In the UK survey, although 93% of respondents endorsed psychological treatment as the treatment of choice, even with a National Health System, only 35% were able to refer their patients to this treatment, and 15% were unable to refer any patient. This difference highlights the importance of adequate mental health access in a health-care system as a component of the treatment gap. Addressing the difficulties that neurologists face when referring patients to therapy, despite the knowledge of its importance, will be an important future step. 4.8. Strengths and limitations A major strength of this study is that this survey addressed BLAE members who see patients with PNES. Therefore, it represents how these neurologists diagnose, communicate, and treat PNES. This selected group of professionals, however, may not represent practices of providers among the whole country, or other specialist neurologists, or those whose practices are not restricted to tertiary care centers. Whether neurologists and psychiatrists diagnose these patients equally remains a question. Another important question is how is PNES communicated to these patients in other settings? No comprehensive studies examine how PNES is communicated across primary and secondary care centers, emergency rooms, and intensive care units. These other settings are relevant, as the environments may influence conceptualization of PNES. In our study, none of the respondents identified these events as volitional/purposeful behavior; however, the stigma of PNES or the lack of understanding may be a possible reason for later referral to tertiary care facilities. Regarding the 29% response rate in this sample, this is consistent with prior uncompensated surveys of HCPs (range of 8% to 45% response rate) (see [15] for a list of other similar national and international surveys). A limitation of this type of survey is that the proportions reported of patients seen, investigated, and managed are based upon individual's recollections rather than upon actual data. Therefore, information about the PNES is not formed from actual data or patient encounters but from memory and overall impression. A final critique is that the survey was administered in Brazil, and results may not be comparable to other countries. While the survey was not administered at the same time as the prior US and Chilean surveys, the Brazilian survey administration followed the same rules as the two prior survey administrations, allowing a comparison of overall responses. In conclusion, despite the similarities that patients with PNES share across the world, distinct health-care systems may impact the diagnoses and treatment. Providing a comprehensive approach across centers may provide more knowledge about PNES, beyond the current emphasis on psychoeducational measures, and the use of psychoactive drugs and AEDs. In addition, more regional health-care policies are also necessary because of relevant differences in health-care systems and consequently in the HCPs' attitudes and their difficulties, such as limited access to vEEG and referral to effective psychotherapy for PNES. Disclosures Dr. Valente received grants from the Brazilian Research and Development Council (CNPQ 307105/2006-7; CNPQ 307262/2011-1) and Foundation for Research Support of the State of São Paulo (FAPESP — 13/11361-4; 12/09025-3; 07/52110-3; 06/56971-0; 05/56464-9). Dr. Rzezak receives a grant from FAPESP (12/09025-3; 12/13065-0).
Please cite this article as: Valente KD, et al, Standard medical care for psychogenic nonepileptic seizures in Brazil, Epilepsy Behav (2015), http:// dx.doi.org/10.1016/j.yebeh.2015.02.032
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Dr. LaFrance has served on the editorial boards of Epilepsia and Epilepsy & Behavior; receives editor's royalties from the publication of Gates and Rowan's Nonepileptic Seizures, 3rd ed. (Cambridge University Press, 2010) and 4th ed. (2015); Taking Control of Your Seizures: Workbook and Therapist Guide (Oxford University Press, 2015); has received research support from the NIH (NINDS 5K23NS45902 [PI]), Rhode Island Hospital, the American Epilepsy Society (AES), the Epilepsy Foundation (EF), and the Siravo Foundation; serves on the Epilepsy Foundation Professional Advisory Board; has received honoraria for the American Academy of Neurology Annual Meeting Annual Course; has served as a clinic development consultant at University of Colorado Denver, Cleveland Clinic and Emory University; and has provided medicolegal expert testimony. References [1] LaFrance WC. “Hysteria” today and tomorrow. Front Neurol Neurosci 2014;35: 198–204. http://dx.doi.org/10.1159/000360064. [2] Yang CH, Lee YC, Lin CH, Chang K. Conversion disorders in childhood and adolescence: a psychiatric consultation study in a general hospital. Zhonghua Min Guo Xiao Er Ke Yi Xue Hui Za Zhi 1996;37(6):405–9. [3] De Paola L, Silvado C, Mäder-Joaquim MJ, Minhoto GR, Werneck LC. Clinical features of Psychogenic Nonepileptic Seizures (PNES): analysis of a Brazilian series. J Epilepsy Clin Neurophys 2006;12:37–40. [4] Szabó L, Siegler Z, Zubek L, Liptai Z, Körhegyi I, Bánsági B, et al. A detailed semiologic analysis of childhood psychogenic nonepileptic seizures. Epilepsia 2012;53(3): 565–70 [cited 2014 Nov 17]. [5] Paim J, Travassos C, Almeida C, Bahia L, Macinko J. The Brazilian health system: history, advances, and challenges. Lancet 2011;377(9779):1778–97. [6] LaFrance Jr WC, Rusch MD, Machan JT. What is “treatment as usual” for nonepileptic seizures? Epilepsy Behav 2008;12(3):388–94. http://dx.doi.org/10.1016/j.yebeh. 2007.12.017. [7] LaFrance Jr WC, Alosco ML, Davis JD, Tremont G, Ryan CE, Keitner GI, et al. Impact of family functioning on quality of life in patients with psychogenic nonepileptic seizures versus epilepsy. Epilepsia 2011;52(2):292–300. [8] Syed TU, LaFrance Jr WC, Kahriman ES, Hasan SN, Rajasekaran V, Gulati D, et al. Can semiology predict psychogenic nonepileptic seizures? A prospective study. Ann Neurol 2011;69(6):997–1004 [Internet, cited 2014 Nov 17]. [9] LaFrance Jr WC, Reuber M, Goldstein LH. Management of psychogenic nonepileptic seizures. Epilepsia 2013;54(Suppl. 1):53–67. [10] LaFrance Jr WC, Baker GA, Duncan R, Goldstein LH, Reuber M. Minimum requirements for the diagnosis of psychogenic nonepileptic seizures: a staged approach: a report from the International League Against Epilepsy Nonepileptic Seizures Task Force. Epilepsia 2013;54(11):2005–18. [11] Mayor R, Smith PE, Reuber M. Management of patients with nonepileptic attack disorder in the United Kingdom: a survey of health care professionals. Epilepsy Behav 2011;21(4):402–6.
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Please cite this article as: Valente KD, et al, Standard medical care for psychogenic nonepileptic seizures in Brazil, Epilepsy Behav (2015), http:// dx.doi.org/10.1016/j.yebeh.2015.02.032
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Standard medical care for psychogenic nonepileptic seizures in Brazil Kette D. Valente a,b,⁎, Patricia Rzezak a,b, W. Curt LaFrance Jr. c a b c
Laboratory of Neuroimaging in Neuroscience (LIM 21), University of São Paulo (USP) School of Medicine, São Paulo, SP, Brazil Laboratory of Clinical Neurophysiology, Psychiatry Department, University of São Paulo (USP) School of Medicine, São Paulo, SP, Brazil Neuropsychiatry and Behavioral Neurology, Rhode Island Hospital, Brown University, Providence, RI, USA
a r t i c l e
i n f o
Article history: Received 8 December 2014 Revised 3 February 2015 Accepted 24 February 2015 Available online xxxx Keywords: Nonepileptic seizures Diagnosis Video-EEG Treatment
a b s t r a c t Knowledge about health systems can promote implementation of more specific and strategic health practices for patients with psychogenic nonepileptic seizures (PNES). For this purpose, we surveyed the current management of PNES (standard medical care [SMC]) by Brazilian League Against Epilepsy members. Respondents reported diagnosing PNES with a mean frequency of 3 patients/month. Video-EEG (vEEG) was considered the best method for the diagnosis. Respondents who have vEEG in their facilities refer to vEEG significantly more often than those who have no vEEG (p b 0.001). Therefore, South and Southeast Brazil regions referred patients more frequently to vEEG than other regions (p = 0.004). Psychotherapy was considered the most effective (92.2%) treatment option, followed by education (75%) and psychopharmacology (70.3%). There were no regional differences considering treatment. The study identified current national diagnostic and treatment practices across the country and identified relevant Brazilian regional differences. © 2015 Elsevier Inc. All rights reserved.
1. Introduction Psychogenic nonepileptic seizures (PNES) represent a universal human condition, and are recognized as a worldwide phenomenon [1]. Multiple cross-cultural descriptions of patients' demographics, semiology, and coexisting neurological and psychiatric disorders suggest that there are many similarities, unrelated to cultural and economic differences [2–4]. Only one previous study provided a direct comparison between health-care providers (HCP) from two countries, in this case, Chile and USA [5]. This study showed differences in the diagnosis and treatment of PNES that were deemed to be related to the health-care system and professional medical attitudes. The Brazilian Health System has particularities distinct from other South American countries, such as Chile, that notably influence health care; care is distinctly divided into private and public sectors. It is estimated that the public sector serves approximately 75% of a population of almost 200 million Brazilians, representing the largest public system in the world [5]. The public system is divided into primary, secondary, and tertiary care centers, stratified in a hierarchical model. Tertiary care facilities, as opposed to primary care centers, are assigned complex cases [5]. Another particularity is that tertiary care facilities are not equally distributed across distinct Brazilian regions, with a lower concentration in North and Northeast regions [5]. This system is distinct from other systems in South America, and for this reason, the authors ⁎ Corresponding author at: University of São Paulo, Laboratory of Clinical Neurophysiology, Psychiatry Department, R. Dr. Ovídio Pires de Campos, 785 Caixa Postal 3671, CEP 01060-970 São Paulo, SP, Brazil. E-mail address: [email protected] (K.D. Valente).
postulated that some regional differences would be observed in medical practice and care for patients with PNES in Brazil. Knowledge about differences between health systems and HCP can promote implementation of more specific and strategic health practices for patients with PNES in Brazil and other countries. In addition, with practice knowledge, more effective strategies for diagnosis, referral, and treatment for PNES could be delineated. For this purpose, we surveyed and reported the current management of PNES standard medical care (SMC) by HCP of the Brazilian League Against Epilepsy (BLAE). 2. Methods 2.1. Study design The PNES SMC questionnaire developed by LaFrance et al. [6] was administered to the BLAE members. The survey was available from June to August of 2014. Four emails with a link to the web survey were sent to this sample during this period. The PNES SMC practices questionnaire was designed to quantify the approaches to diagnosis and treatment of PNES. 2.2. Questionnaire design A Brazilian physician, with proficiency in both languages, translated the original PNES SMC questionnaire from English to Portuguese. Then, a native-English-speaking teacher with proficiency in English and Portuguese back-translated the questionnaire. The back-translated version was then compared with the original translation by the authors who identified words that did not reflect the original meaning and that
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thus, needed a semantic adaptation. The final questionnaire was rechecked (WCL) and implemented using Survey Monkey. The survey was comprised of 20 items assessing the diagnostic and treatment practices for PNES. For further survey development information, readers are directed to the original survey article [6].
2.3. Data collection and preparation Responses were entered directly into a Survey Monkey database. Data from the email survey were collected with the compilation software from Survey Monkey, which provides anonymous collection of survey responses. Data were reformatted and imported into Stata version 12.0. In all surveys, more than 50% of responses were completed. Based on this criterion, no survey had to be excluded from the final analyses. 2.4. Analysis plan Frequencies and percentages were tabulated for the categorical variables. Continuous variables were reported as means and ranges. The open-ended questions were reviewed for qualitative assessment, and significant themes are noted in the Results. A chi-square or a Fisher chi-square analysis was used to evaluate a possible difference between respondents according to the Brazilian region in which they practiced. Type I error (alpha) was set highly conservatively, at 0.005, to correct for multiple analyses (Bonferroni's correction of 0.05/10 analyses).
3. Results Response rate was calculated as the proportion of sent surveys that were returned. Out of 380 BLAE registered members, 235 had valid email addresses (correct usernames and active servers). Sixty-eight (29%) members answered the survey. Given that not every respondent answered all 20 questions, percentages are reported based on the number of respondents who answered the specific question. One participant was excluded from further analysis because he/she was located outside the country.
3.1. Demographics The distribution of respondents' careers is illustrated in Fig. 1. The majority of the respondents were epileptologists (n = 31), followed by people with unspecified careers (n = 17) and nonepileptologist neurologists (n = 15). Seven (41%) out of 17 professionals classified with unspecified careers were child neurologists. Neuropsychiatrists, neuropsychologists, and psychiatrists accounted for the remaining 12.2% of the respondents. The distribution of respondents' practice locations is shown in Fig. 2. The majority of the respondents were from the Southeast area of Brazil (40/68 [60%]). 3.2. Frequency of making the diagnosis of PNES Respondents (n = 64) reported a frequency of making 3.3 PNES diagnoses per month (range: 1–15 diagnoses/month). Forty-five respondents reported making five or fewer PNES diagnoses per month. Fifteen (31%) respondents reported making b1 PNES diagnoses per month. There was no difference when comparing distinct regions (South and Southeast compared to others) (p = 0.726). 3.3. Diagnostic methodology Routine EEGs were performed at 52 of 67 (78%) respondent practice locations, and video-EEG (vEEG) was performed at 33 (49%) of the practice locations. Thirty-eight (59%) out of 64 respondents reported using vEEG/long-term monitoring (vEEG/LTM) as the most frequently used method to diagnose PNES. Twenty respondents (31%) reported routine EEGs as the next most frequently used technique. Fourteen respondents (22%) reported using history and exam alone, and 12 (19%) choose outpatient EEG without video to make the diagnosis of PNES (see Fig. 3A). Thirty-one (49%) respondents reported using provocative methods to aid diagnosis. Neurologists, nonneurologists, epileptologists, and nonepileptologists equally answered that vEEG was the best method for the diagnosis (p = 1.000) (Figs. 3B and C). Respondents who have vEEG in their facilities
Fig. 1. Respondent careers (n = 68) [in percentage].
Please cite this article as: Valente KD, et al, Standard medical care for psychogenic nonepileptic seizures in Brazil, Epilepsy Behav (2015), http:// dx.doi.org/10.1016/j.yebeh.2015.02.032
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Fig. 2. Respondent practice locations in Brazil (n = 68).
refer to vEEG more often than those who have no vEEG (p b 0.001). Thirty-one (94%) of 33 clinicians with access to inpatient vEEG reported referring to inpatient vEEG, compared to only seven (21%) of 35 clinicians without direct access to vEEG who referred to inpatient vEEG (p b 0.001). Thirty-three (88%) respondents had vEEG in their center. Twentyeight (55%) respondents in the South/Southeast regions and 5 (25%) respondents in other regions had vEEG in their facilities. The respondents in the South and Southeast regions referred patients more frequently to vEEG than other regions (p = 0.004).
neuropsychiatrists (8%) (Fig. 6). Fifty (79%) respondents reported that the neurologist does not stop seeing the patient with PNES. The rationale shared with patients for a nonneurologist referral, keywords, and specific themes of the responses were assessed qualitatively and quantitatively. The majority of respondents emphasized that the episodes were from an emotional origin and thus, should be treated by psychiatrists and psychologists. Several addressed the fact that AEDs were not effective for these types of episodes.
3.4. Communication of information
Thirty-five of 63 (56%) respondents recommended tapering AEDs in lone PNES, and 68% (43/63) of the respondents recommended initiating psychotropics. Psychotherapy was considered the most effective (92%) treatment option, followed by education (relaying information about the disorder to the patient and family members [75%]) and psychopharmacology (70%) (Fig. 7). An open-ended question queried strategies thought to increase the likelihood that patients would follow through with referrals to psychiatrists and psychologists. Several respondents emphasized that neurologists should continue following patients after the PNES diagnosis. Other frequent themes were the following: (i) the relevance of a clear conversation during the diagnostic process with patient and family when the neurologist should state that PNES is a disorder with serious health implications; (ii) the psychiatrist/psychologist is the best professional to address the patient's condition; (iii) mental health professionals should be available in the same institution where the patient received his/her diagnosis; (iv) the importance of family support; and (v) psychopharmacology can be a useful tool. There were no regional differences considering psychoeducational measures (p = 0.352), psychotherapy (p = 0.385), and psychopharmacology (p = 0.287).
Fifty-seven of 63 respondents (90%) reported that they discuss the diagnosis of PNES with patients, and 59 (94%) reviewed the diagnosis with families of patients with PNES. 3.5. Terminology The term most often used to describe patients' events is nonepileptic seizures (64%), followed by psychogenic seizures (17%) and seizures with emotional origin (9%). Of the 68 respondents, 7% still use the term pseudoseizures (Fig. 4). 3.6. Etiology Information given as etiology of PNES revealed that trauma or abuse was the most frequently communicated category (22%), followed by anxiety and unknown mechanism (both with 15%), and social (11%) or emotional stressors (10%). Several respondents attribute the episodes to a range of potential convergent mechanisms, depending on the patients' particular circumstances and presentation. Of note, 14% of the respondents reported that they do not provide any possible etiology for patients' episodes (Fig. 5).
3.8. Treatment
4. Discussion 3.7. Disposition The majority of respondents give a recommendation for treatment (78%). Referral to psychiatrists was reported most often (84%), followed by referrals to clinical psychologists (61%). A smaller number of respondents referred their patients to neuropsychologists (9%) and
To our knowledge, this is the first nationally administered survey of Brazilian clinicians aiming to determine the services and treatments offered to persons with PNES. The study identified current diagnostic and treatment practices across the country and identified regional differences, as discussed below.
Please cite this article as: Valente KD, et al, Standard medical care for psychogenic nonepileptic seizures in Brazil, Epilepsy Behav (2015), http:// dx.doi.org/10.1016/j.yebeh.2015.02.032
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Fig. 3. (A) Diagnostic methods used by all provider types (n = 67) [in percentages]. Respondents selected all methods available in their centers. (B and C) Diagnostic methods used by epileptologists and nonepileptologists. Respondents (n = 64) selected all methods available in their centers.
4.1. Demographics Brazil is geopolitically divided into five regions, created according to physical, political, social, and economic similarities. Although all regions were represented, the respondents' distribution was uneven. The higher number of respondents (60%) in the Southeast region can be partially explained by the fact that 40% of the Brazilian population is concentrated in this part of the country. In addition, epilepsy tertiary care centers are mostly located in the Southeast, South, and Central west regions. Therefore, the number of specialists is higher compared to other regions. In this context, this survey is representative of the Brazilian care system for PNES [5]. This survey was directed to the BLAE members, and it is not surprising that most respondents were neurologists (78%), especially epileptologists (46%), which is representative of the most frequent professional careers of the BLAE. This represents a valuable piece of
information, since neurologists are often the first line in PNES diagnosis, communication, and treatment referral [7]. Furthermore, epileptologists are often referred to as a source of education about PNES for students and other professionals. Another indicator of this survey addressing an appropriate sample is that respondents had frequent contact with these patients, with a mean of 3 PNES diagnoses per month.
4.2. Diagnosis Video-EEG/LTM is the gold standard method for the diagnosis of PNES [8–10]. This is a well-accepted concept by BLAE members, considering that vEEG was the most used method for the diagnosis (59%). Respondents without vEEG rely on history (22%) and refer to EEG with provocative measures (49%), since routine EEG is available to most Brazilian respondents (N70%).
Please cite this article as: Valente KD, et al, Standard medical care for psychogenic nonepileptic seizures in Brazil, Epilepsy Behav (2015), http:// dx.doi.org/10.1016/j.yebeh.2015.02.032
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Fig. 4. Terminology used by respondents (n = 68) [in percentage].
The fact that vEEG is often requested when it is available in the respondents' center showed that access plays a major role when considering PNES diagnosis and treatment gaps, as stated by others [11].
4.3. Communication Communication of the diagnosis seems to have an effect reducing unnecessary health-care utilization and iatrogenic measures [12–14]. The vast majority of respondents reported discussing the diagnosis with patients and their families. In agreement with previous data, the majority of neurologists accept that the explanation of PNES is part of their role [6,11,15]. Why Brazilian respondents identify the family as an important part of this process was not queried in this survey. There are some possible reasons: (i) family is recognized as an etiological factor — family dysfunction [7,16,17]; (ii) based on the authors' experience (KDV; PR), family engagement in the diagnosis and treatment of
chronic diseases is part of the Brazilian culture; and (iii) family support promotes understanding of the diagnosis [9,18] and supplies a supportive social network [19]. It is also important to remember that approximately 10% of the respondents were child neurologists. In this scenario, the communication for family is essential, especially for children in younger ages.
4.4. Terminology As in prior surveys [7,11,14], the most used term reported was “nonepileptic seizures” (64%). The next most used term was “psychogenic seizures” (17%), followed by “seizures with emotional origin” (5%). It must be stressed that the term “psychogenic nonepileptic seizures” — the most widely accepted and used in literature — was not part of the possible answers, mirroring the fact that it was not included in the original SMC survey. In this context, it is not feasible to
Fig. 5. Etiology of PNES given by respondents (n = 49) [in percentage]. Some respondents selected more than one category.
Please cite this article as: Valente KD, et al, Standard medical care for psychogenic nonepileptic seizures in Brazil, Epilepsy Behav (2015), http:// dx.doi.org/10.1016/j.yebeh.2015.02.032
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Fig. 6. Treatment referral providers [in percentage]. Respondents (n = 64) could select more than one category.
determine if respondents would have chosen this term over the term “nonepileptic seizures”. The term pseudoseizure, which is not advised because of its stigmatizing character, was used by only a small percentage of the respondents (7%), which may reflect the growing knowledge about the importance of appropriate terminology in the communication process and how it must be utilized. 4.5. Etiology Trauma/abuse, anxiety, and unknown causes were almost equally identified as possible etiologies of PNES. In the original US survey, the most common etiological factors shared for PNES were environmental stressors and trauma/abuse [7], and in Chile, anxiety and unknown causes were shared as etiological factors. Brazilian epileptologists identified trauma and abuse as more representative than environmental stressors. These disparities may represent the nature of cross-cultural understanding of PNES. It is of note that none of the Brazilian respondents identified PNES as a purposeful behavior, possibly identifying a growing understanding of the unconscious contributors to conversion disorder seizures.
4.6. Treatment Most respondents (78%) reported referring patients with PNES to psychiatrists and psychologists for treatment. This is in agreement with current statements on the management of PNES [9,20] and emphasizes the importance of psychotherapy, which is the most validated approach to treat PNES [21]. How many patients actually have access to these treatments, especially to psychotherapy, was not queried in this survey. Brazilian respondents considered educational measures and psychopharmacology equally important. This finding may possibly represent the erroneous assumption that patients simply need to understand the meaning of PNES following communication [22]. Currently, educational measures play a major role, representing the first step for further engagement in treatment [23]. Pharmacology was rated as important in this survey. This may reflect the difficulty in obtaining treatment with a psychiatrist and psychotherapy. In this case, the neurologist may feel the professional obligation to treat psychiatric comorbidities. The reasons why neurologists continue to follow their patients were not surveyed; however, it is in agreement with previous studies that recognize that this follow-up is important [22,24]. Ongoing involvement
Fig. 7. Effective treatment [in percentage]. Respondents (n = 64) could select more than one category.
Please cite this article as: Valente KD, et al, Standard medical care for psychogenic nonepileptic seizures in Brazil, Epilepsy Behav (2015), http:// dx.doi.org/10.1016/j.yebeh.2015.02.032
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of the neurologist who makes the diagnosis or who follows the patients is important to reinforce the diagnosis for patients and for psychiatrists who receive this patient. It is not unusual for psychiatrists to question the diagnosis of PNES [25]. Although it is common knowledge that AEDs do not treat PNES and reinforce the diagnosis of epilepsy, 44.4% of the respondents do not taper AEDs in lone PNES following the diagnosis. This may represent physicians' uncertainty about the diagnosis of possible epilepsy, lack of knowledge of PNES treatment, or fear of relapses. It is also possible that epileptologists are aware of the limitations of vEEG [7] and the fact that some Brazilian respondents had to rely on history and EEG. The time between diagnosis and treatment referral with a psychiatrist represents a gap of time, and neurologists may feel the need to treat their patients in the interim [26,27]. Two distinct needs are present: neurologists who want to provide some treatment for their patients and patients' fear about “lack of treatment” after the diagnosis. 4.7. Comparison with practices in diagnoses and treatment: interand intradifferences Brazilian respondents reported seeing a higher number of patients with PNES, when compared to previous surveys with UK and Chilean neurologists [15]. The rate is comparable to the US [10], but the reasons for this similarity may differ. The limited number of epilepsy tertiary care centers in Brazil, compared to the US, may lead to a frequent referral of patients with PNES to these centers [28]. Neurologists across the world favored the term nonepileptic seizures over others. The term “dissociative events” was not used by the respondents, and it may reflect the fact that a low number of psychiatrists/psychologists answered the survey, compared to previous surveys in the US [4] and UK [11]. A survey administered to Brazilian psychiatrists would be of interest to examine possible differences in this approach. 4.7.1. Diagnoses The use of vEEG to diagnose PNES differs across continents [15]. The diagnosis of PNES was made by inpatient vEEG in 89% of the responding US epilepsy centers, for 72.5% of the clinicians in the UK, and by 25% of the responding Chilean epilepsy centers [11,15]. The diagnosis of PNES was made by history and exam alone at twice the rate in Chile (38%) than in the USA (16%) [4,5]. There were significant intracontinent differences when Brazil (59.4%) and Chile are compared according to vEEG use. It is of note that although Chile and Brazil are South American countries with economic and social similarities, several survey questions were answered differently, and probably this may differ even more if administered in other South American countries. In a regional analysis, comparing distinct Brazilian regions and acknowledging distinct environments, we observed that neurologists in the South and Southeast regions refer patients to vEEG more often than their counterparts in the North, Northeast and Central west regions that have more limited access to this method. This is in line with the idea that the use of vEEG is strongly related to the access to this method [29]. 4.7.2. Treatment Referral to psychiatrists was comparable to US and Chilean respondents. Brazilian respondents, however, referred to psychiatrists more often than UK respondents. On the other hand, the referral to psychologists and the number of neurologists who continue following patients is similar to what was documented in the UK, but higher than that in the US and Chile. Responses regarding AED discontinuation and prescribing psychoactive drug survey are very similar to those observed in Chile, with lower rates of AED withdrawal and higher rates of psychoactive drug prescription compared to the US and UK.
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The lack of access to adequate therapy after referral may justify why psychoactive drugs are prescribed more often and AEDs are withdrawn less often. This treatment gap between the moment of diagnosis, communication, referral, and proper therapy may also justify the ongoing follow-up of neurologists, which is very high in some countries. Differences in practice are not restricted to a division between developing and developed countries, as demonstrated by the UK survey. In the UK survey, although 93% of respondents endorsed psychological treatment as the treatment of choice, even with a National Health System, only 35% were able to refer their patients to this treatment, and 15% were unable to refer any patient. This difference highlights the importance of adequate mental health access in a health-care system as a component of the treatment gap. Addressing the difficulties that neurologists face when referring patients to therapy, despite the knowledge of its importance, will be an important future step. 4.8. Strengths and limitations A major strength of this study is that this survey addressed BLAE members who see patients with PNES. Therefore, it represents how these neurologists diagnose, communicate, and treat PNES. This selected group of professionals, however, may not represent practices of providers among the whole country, or other specialist neurologists, or those whose practices are not restricted to tertiary care centers. Whether neurologists and psychiatrists diagnose these patients equally remains a question. Another important question is how is PNES communicated to these patients in other settings? No comprehensive studies examine how PNES is communicated across primary and secondary care centers, emergency rooms, and intensive care units. These other settings are relevant, as the environments may influence conceptualization of PNES. In our study, none of the respondents identified these events as volitional/purposeful behavior; however, the stigma of PNES or the lack of understanding may be a possible reason for later referral to tertiary care facilities. Regarding the 29% response rate in this sample, this is consistent with prior uncompensated surveys of HCPs (range of 8% to 45% response rate) (see [15] for a list of other similar national and international surveys). A limitation of this type of survey is that the proportions reported of patients seen, investigated, and managed are based upon individual's recollections rather than upon actual data. Therefore, information about the PNES is not formed from actual data or patient encounters but from memory and overall impression. A final critique is that the survey was administered in Brazil, and results may not be comparable to other countries. While the survey was not administered at the same time as the prior US and Chilean surveys, the Brazilian survey administration followed the same rules as the two prior survey administrations, allowing a comparison of overall responses. In conclusion, despite the similarities that patients with PNES share across the world, distinct health-care systems may impact the diagnoses and treatment. Providing a comprehensive approach across centers may provide more knowledge about PNES, beyond the current emphasis on psychoeducational measures, and the use of psychoactive drugs and AEDs. In addition, more regional health-care policies are also necessary because of relevant differences in health-care systems and consequently in the HCPs' attitudes and their difficulties, such as limited access to vEEG and referral to effective psychotherapy for PNES. Disclosures Dr. Valente received grants from the Brazilian Research and Development Council (CNPQ 307105/2006-7; CNPQ 307262/2011-1) and Foundation for Research Support of the State of São Paulo (FAPESP — 13/11361-4; 12/09025-3; 07/52110-3; 06/56971-0; 05/56464-9). Dr. Rzezak receives a grant from FAPESP (12/09025-3; 12/13065-0).
Please cite this article as: Valente KD, et al, Standard medical care for psychogenic nonepileptic seizures in Brazil, Epilepsy Behav (2015), http:// dx.doi.org/10.1016/j.yebeh.2015.02.032
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Dr. LaFrance has served on the editorial boards of Epilepsia and Epilepsy & Behavior; receives editor's royalties from the publication of Gates and Rowan's Nonepileptic Seizures, 3rd ed. (Cambridge University Press, 2010) and 4th ed. (2015); Taking Control of Your Seizures: Workbook and Therapist Guide (Oxford University Press, 2015); has received research support from the NIH (NINDS 5K23NS45902 [PI]), Rhode Island Hospital, the American Epilepsy Society (AES), the Epilepsy Foundation (EF), and the Siravo Foundation; serves on the Epilepsy Foundation Professional Advisory Board; has received honoraria for the American Academy of Neurology Annual Meeting Annual Course; has served as a clinic development consultant at University of Colorado Denver, Cleveland Clinic and Emory University; and has provided medicolegal expert testimony. References [1] LaFrance WC. “Hysteria” today and tomorrow. Front Neurol Neurosci 2014;35: 198–204. http://dx.doi.org/10.1159/000360064. [2] Yang CH, Lee YC, Lin CH, Chang K. Conversion disorders in childhood and adolescence: a psychiatric consultation study in a general hospital. Zhonghua Min Guo Xiao Er Ke Yi Xue Hui Za Zhi 1996;37(6):405–9. [3] De Paola L, Silvado C, Mäder-Joaquim MJ, Minhoto GR, Werneck LC. Clinical features of Psychogenic Nonepileptic Seizures (PNES): analysis of a Brazilian series. J Epilepsy Clin Neurophys 2006;12:37–40. [4] Szabó L, Siegler Z, Zubek L, Liptai Z, Körhegyi I, Bánsági B, et al. A detailed semiologic analysis of childhood psychogenic nonepileptic seizures. Epilepsia 2012;53(3): 565–70 [cited 2014 Nov 17]. [5] Paim J, Travassos C, Almeida C, Bahia L, Macinko J. The Brazilian health system: history, advances, and challenges. Lancet 2011;377(9779):1778–97. [6] LaFrance Jr WC, Rusch MD, Machan JT. What is “treatment as usual” for nonepileptic seizures? Epilepsy Behav 2008;12(3):388–94. http://dx.doi.org/10.1016/j.yebeh. 2007.12.017. [7] LaFrance Jr WC, Alosco ML, Davis JD, Tremont G, Ryan CE, Keitner GI, et al. Impact of family functioning on quality of life in patients with psychogenic nonepileptic seizures versus epilepsy. Epilepsia 2011;52(2):292–300. [8] Syed TU, LaFrance Jr WC, Kahriman ES, Hasan SN, Rajasekaran V, Gulati D, et al. Can semiology predict psychogenic nonepileptic seizures? A prospective study. Ann Neurol 2011;69(6):997–1004 [Internet, cited 2014 Nov 17]. [9] LaFrance Jr WC, Reuber M, Goldstein LH. Management of psychogenic nonepileptic seizures. Epilepsia 2013;54(Suppl. 1):53–67. [10] LaFrance Jr WC, Baker GA, Duncan R, Goldstein LH, Reuber M. Minimum requirements for the diagnosis of psychogenic nonepileptic seizures: a staged approach: a report from the International League Against Epilepsy Nonepileptic Seizures Task Force. Epilepsia 2013;54(11):2005–18. [11] Mayor R, Smith PE, Reuber M. Management of patients with nonepileptic attack disorder in the United Kingdom: a survey of health care professionals. Epilepsy Behav 2011;21(4):402–6.
[12] Martin RC, Gilliam FG, Kilgore M, Faught E, Kuzniecky R. Improved health care resource utilization following video-EEG confirmed diagnosis of nonepileptic psychogenic seizures. Seizure 1998;7:385–90. [13] McKenzie P, Oto M, Russell A, Pelosi A, Duncan R. Early outcomes and predictors in 260 patients with psychogenic nonepileptic attacks. Neurology 2010;74:64–9. [14] Razvi S, Mulhern S, Duncan R. Newly diagnosed psychogenic nonepileptic seizures: health care demand prior to and following diagnosis at a first seizure clinic. Epilepsy Behav 2012;23:7–9. [15] LaFrance Jr WC, de Marinis AJ, Webb AF, Machan JT, Rusch MD, Kanner AM. Comparing standard medical care for nonepileptic seizures in Chile and the United States. Epilepsy Behav 2012;25(2):224–9. [16] Krawetz P, Fleisher W, Pillay N, Staley D, Arnett J, Maher J. Family functioning in subjects with pseudoseizures and epilepsy. J Nerv Ment Dis 2001;189(1):38–43. [17] Moore PM, Baker GA, McDade G, Chadwick D, Brown S. Epilepsy, pseudoseizures and perceived family characteristics: a controlled study. Epilepsy Res 1994;18(1): 75–83. [18] Archambault RC, Ryan CE. Family therapy for patients diagnosed with psychogenic nonepileptic seizures. In: Schachter SC, Lafrance Jr WC, editors. Gates and Rowan's nonepileptic seizures. 3rd ed. Cambridge; New York: Cambridge University Press; 2010. p. 317–26. [19] Reeves D, Blickem C, Vassilev I, Brooks H, Kennedy A, Richardson G, et al. The contribution of social networks to the health and self-management of patients with long-term conditions: a longitudinal study. PLoS One 2014;9(6). [20] Harden CL, Ferrando SJ. Delivering the diagnosis of psychogenic pseudoseizures: should the neurologist or the psychiatrist be responsible? Epilepsy Behav 2011;2: 519–23. [21] LaFrance Jr WC, Baird GL, Barry JJ, Blum AS, Frank Webb A, Keitner GI, et al. Multicenter pilot treatment trial for psychogenic nonepileptic seizures: a randomized clinical trial. JAMA Psychiatry 2014;71(9):997–1005. [22] Kanner A. Is the neurologist's role over once the diagnosis of psychogenic nonepileptic seizures is made? No! Epilepsy Behav 2008;12:1–2. [23] Reuber M, Jamnadas-Khoda J, Broadhurst M, Grunewald R, Howell S, Koepp M, et al. Psychogenic nonepileptic seizure manifestations reported by patients and witnesses. Epilepsia 2011;52(11):2028–35 [Internet, cited 2014 Nov 17]. [24] Lacey C, Cook M, Salzberg MR. The neurologist, psychogenic nonepileptic seizures, and borderline personality disorder. Epilepsy Behav 2007;11:492–8. [25] Harden CL, Burgut FT, Kanner AM. The diagnostic significance of video-EEG monitoring findings on pseudoseizure patients differs between neurologists and psychiatrists. Epilepsia 2003;44(3):453–6. [26] Mateus MD, Mari JJ, Delgado PG, Almeida-Filho N, Barrett T, Gerolin J, et al. The mental health system in Brazil: policies and future challenges. Int J Ment Health Syst 2008;2(1):12. [27] Oliveira GL, Caiaffa WT, Cherchiglia ML. Mental health and continuity of care in healthcare centers in a city of Southeastern Brazil. Rev Saude Publica 2008;42(4): 707–16. [28] Palmini A. Medical and surgical strategies for epilepsy care in developing countries. Epilepsia 2000;41(Suppl. 4):S10–7. [29] Mayor R, Brown RJ Cock H, House A, Howlett S, Smith P, Reuber M. Seizure 2013; 22(9):760–5.
Please cite this article as: Valente KD, et al, Standard medical care for psychogenic nonepileptic seizures in Brazil, Epilepsy Behav (2015), http:// dx.doi.org/10.1016/j.yebeh.2015.02.032
