Experience of Psychogenic Non Epileptic Seizures in Canada: A survey describing current practices
Abstract number :
2.280
Submission category :
11. Behavior/Neuropsychology/Language / 10C. All Ages
Year :
2016
Submission ID :
199499
Source :
www.aesnet.org
Presentation date :
12/4/2016 12:00:00 AM
Published date :
Nov 21, 2016, 18:00 PM
Authors :
Alexandra Voll, University of Saskatchewan; Jose Francisco Tellez Zenteno, University of Saskatchewan; Lizbeth Hernandez Ronquillo, Universit of Saskatchewan; Markus Reuber, University of Sheffield; and PNES Canada Group, PNES Canada Group
Rationale: Psychogenic nonepileptic seizures (PNES) are cited as the third most frequent diagnosis in seizure clinic. PNES is a heterogenous disorder with multifactorial etiology. Neurologists are often the first point of entry for these patients, however there are currently no evidence-based guidelines to support management. An international task force (International League Against Epilepsy PNES project) has been recently created to address this issue. Our objective is to describe current management in Canada, identify different styles of practice and service gaps. Methods: A 35 question survey was sent via email to the 131 current members of the Canadian League Against Epilepsy. The questions were designed after literature review and discussion with Dr. Markus Reuber, lead author of the ILAE PNES project. This survey is validated in the UK and has been applied in different international populations. Results: The response rate was 47% (62/131). The majority of respondents were epileptologists (75%). 77% (48) of respondents diagnose between 1 and 20 new cases of PNES annually. The majority of respondents personally diagnose and communicate the diagnosis of NES to the patient. Only 55% provide follow up within their practice after diagnosis and approximately 50% recommend or arrange treatment. A large minority (35%) are either unfamiliar with the diagnosis and treatment of NES, and are inexperienced in arranging and offering treatment. 77% (48) of respondents have diagnosed 80-100% of the PNES patients in their practice with video-EEG recording, supported with simultaneous typical attack. 97% (60) of respondents report that a neurologist first communicates diagnosis of PNES to the patient. 60% (37) of respondents offer patients at least one follow-up appointment after the diagnosis is initially explained. Most (79%) provide follow-up to those patients with concomitant epilepsy, but, otherwise, follow-up rates are low. 84% of respondents feel that individualized psychological therapy is the most effective treatment. Conclusions: To our knowledge, this is the first Canadian study of its kind. Our response rate was significantly higher than those of the UK study (8.6%), or of the American study (18%). We observed a good distribution of responses across Canada. We observed a relatively even distribution of factors contributing to onset and maintenance of PNES. Many studies, including ours, have found that once the diagnosis is made, patients are discharged from the neurological service without appropriate psychiatric referral in place. This may lead to "bounce-back" and repeated ER visits, with increased potential for adverse events. Comparison between our survey and the surveys conducted within the UK and USA yielded several interesting observations: most patients are diagnosed with gold-standard investigations in all three countries. Neurology communicates the diagnosis first, and it is similarly explained to patients. Canada and the UK reported low follow-up rates (50-60%), as well as low referral rates to psychology and psychiatry (35% UK, 51% Canada). The USA study reported that most neurologists routinely provide follow-up after the diagnosis (70%). As well, most American providers refer to psychiatry (75%), while 93% recommend a treatment (vs. 56% Canada). We hope to use this data to help establish guidelines for the diagnosis and management of PNES, increasing standardization of practice across the country. Funding: None
Behavior/Neuropsychology