Abstract
Hingray C, El-Hage W, Duncan R, Gigineishvili D, Kanemoto K, LaFrance WC Jr, de Marinis A, Paul R, Pretorius C, Téllez-Zenteno JF, Wiseman H, Reuber M. Epilespia 2018;59:203–214.
OBJECTIVE: Studies from a small number of countries suggest that patients with psychogenic nonepileptic seizures (PNES) have limited access to diagnostic and treatment services. The PNES Task Force of the International League Against Epilepsy (ILAE) carried out 2 surveys to explore the diagnosis and treatment of PNES around the world. METHODS: A short survey (8 questions) was sent to all 114 chapters of the ILAE. A longer survey (36 questions) was completed by healthcare professionals who see patients with seizures. Questions were separated into 5 sections: professional role, diagnostic methods, management, etiology, and access to health care. RESULTS: Responses were received from 63 different countries. The short survey was completed by 48 ILAE chapters, and the long survey by 1098 health professionals from 28 countries. PNES were recognized as a diagnostic and therapeutic problem in all countries. Trauma and mental health issues were most commonly recognized as etiologic factors. There was a clear relationship between income and access to diagnostic tests and expertise. Psychological therapy was most commonly considered the treatment of choice. Although financial difficulties were the most commonly reported problem with service access in low-income countries, in all countries stigma, lack of popular awareness, and lack of information posed challenges. SIGNIFICANCE: This global provider survey demonstrates that PNES are a health problem around the world. Health care for PNES could be improved with better education of healthcare professionals, the development of reliable and simple diagnostic procedures that do not rely on costly tests, and the provision of accessible information.
Commentary
For many decades, the major focus in the neurologic literature on the topic of psychogenic nonepileptic seizures (PNES) was to diagnose them accurately in order to make sure there was no epilepsy to treat. This is the major task in the evaluation of psychogenic seizures for most neurologists who generally see the patient at most once more before sending the patient to a mental health professional for treatment. This was common practice based on the unspoken belief that neurologists had no role in the treatment of PNES beyond diagnosis. Such belief may be influenced by misperceptions about PNES, especially by diagnosing clinicians, as voluntarily produced, highlighted by the former labels, hysterical or pseudoseizures, and that patients could choose to stop episodes if they wanted. Ignoring patients with functional neurologic disorders (FND), such as PNES, has not been an effective strategy and there are data suggesting that patients cannot stop them at will. Rather this is a disorder in which there is a transient disturbance of cognitive control due to the activation of an automatic process influenced by various cognitive and emotional factors (1). PNES occur throughout the world, in both sexes, from childhood to old age and are prevalent in neurology clinics along with other functional disorders (2, 3). Patients with PNES continue to be high users of the health system, including emergency visits, and their clinical and social outcomes are generally poor (4). Interest and understanding of mechanism of FND is increasing over the past 10 years with models explaining how they develop and are perpetuated discovered through functional neuroimaging studies in psychogenic movement disorders that prove a different activation and functional connectivity of brain regions involved in sense of movement authorship (self agency) compared with voluntary movements (5).
There is also growing research focused on treatments for PNES including a few randomized controlled trials. While this surge in PNES research is quite exciting, there are still many problems regarding understanding and accepting the diagnosis for both patients and clinicians, finding accessible treatment programs, and providers willing and trained to care for these patients. These are barriers to care, or part of “access to care” that can mean many different things depending on the system and location of care (6).
In 2011, the International League Against Epilepsy (ILAE) created a PNES task force to review the key issues for access to care because it had determined PNES to be a most important neuropsychiatric condition. This task force provided consensus on how to determine diagnostic certainty of episodes in any medical situation to aid in ability to move toward treatment in under resourced areas of the world (7). It also reviewed differences in management (8) and highlighted the gaps in care in countries with varying levels of social and economic development (9). In a recent study, Hingray and colleagues developed two simple surveys to better understand access to services and treatment for PNES worldwide. ILAE chapters were queried about provisions for PNES in their countries and had a 42% response rate. Health professionals who care for patients with PNES (1098 clinicians from 28 countries) were also surveyed about management. The surveys revealed significant differences in access to expertise and testing based on income as the main finding, though there were several biases in responses. The income level of the country influenced which clinician saw the patient, what was recommended, as well as how confident they were in the management of the patient. High income country responders were the most likely to complete the survey and were more likely to be subspecialist epileptologists. Middle income country responders were more likely to be mental health clinicians (i.e., psychiatrists, psychologists), and low income country responders were more likely to be generalists. Access to care is complicated by multiple factors acting as determinants, some not as obvious. Beliefs and values of society (whether the treatment matters with respect to other issues facing the community), are important determinants of whether patients access care (6). In addition, poor knowledge and public awareness of the disorder are important reasons that patients do not follow-up on recommended care and are barriers for adherence to available evidence-based treatments, such as cognitive behavioral therapy. A recent study showed that the rate of completion of the majority of the prescribed psychotherapy sessions was surprisingly low (only 14%) for patients with definitively diagnosed PNES (10).
Access however, is not just a problem in underresourced countries. There are relatively few programs with expertise in treating PNES even within the highly resourced level four epilepsy centers in the United States, which focus on diagnosing or localizing epilepsy rather than getting all patients with seizure disorders the treatment/care they need. It is possible that the high specialization in the higher income countries is detrimental to treatment of disorders that require more integrated and collaborative care. Additionally, there is a gap in lay person knowledge of this disorder with continued stigma associated with PNES. This is compounded by the lack of comfort that neurologists and psychiatrists have in continuing to care for this group of patients and believing there is no “real” disorder present. Creating clear educational programs using best practices or evidence-based guidelines for clinicians who care for patients with PNES is a very important step to decrease stigma and improve the quality of information to enable us to understand why outcomes are poor here and how to introduce beneficial change. This requires obtaining evidence on what works best to improve patient outcomes and requires getting patients and all clinicians (generalist and specialist) to communicate and work together in an integrated fashion rather than at odds with each other (11). Currently, there are no evidence-based guidelines for PNES.
As more understanding and compassion for functional disorders such as PNES emerges, and the disorder becomes more accepted and understood by patients and less stigmatized and avoided by clinicians, access to these resources will likely improve. It appears that the world is beginning to warm up to this possibility.