PNES around the world: Where we are now and how we can close the diagnosis and treatment gaps—an ILAE PNES Task Force report

Abstract

SummaryAn international consensus clinical practice statement issued in 2011 ranked psychogenic nonepileptic seizures (PNES) among the top three neuropsychiatric problems. An ILAE PNES Task Force was founded and initially charged with summarizing the current state of the art in terms of diagnosis and treatment, resulting in two publications. The first described different levels of diagnostic certainty. The second summarized current knowledge of management approaches. The present paper summarizes an international workshop of the ILAE PNES Task Force that focused on the current understanding and management of PNES around the world. We initially provide a knowledge update about the etiology, epidemiology, and prognosis of PNES—in adults and in special patient groups, such as children, older adults, and those with intellectual disability. We then explore clinical management pathways and obstacles to optimal care for this disorder around the world by focusing on a number of countries with different cultural backgrounds and at very different stages of social and economic development (United Kingdom, U.S.A., Zambia, Georgia, China, and Japan). Although evidence‐based methods for the diagnosis and treatment of PNES have now been described, and much is known about the biopsychosocial underpinnings of this disorder, this paper describes gaps in care (not only in less developed countries) that result in patients with PNES not having adequate access to healthcare provisions. A range of challenges requiring solutions tailored to different healthcare systems emerges. Continued attention to PNES by the ILAE and other national and international neurologic, psychiatric, and health organizations, along with ongoing international collaboration, should ensure that patients with PNES do not lose out as healthcare services evolve around the world.

Access to diagnostic and therapeutic facilities for psychogenic nonepileptic seizures: An international survey by the ILAE PNES Task Force

“…1 People with PNES usually present to the same health service providers as those with epilepsy. For these reasons, the International League Against Epilepsy (ILAE) appointed a PNES Task Force.…”

“…[4][5][6] Nonetheless different sociocultural groups appear to understand PNES-like behaviors in different ways, 7 and at least some etiologic factors may differ among cultures. 1,8 Despite widespread recognition of PNES and consensus on the diagnostic process, 3 diagnostic delays are common.…”

Medical health care utilization cost of patients presenting with psychogenic nonepileptic seizures

“…Early diagnosis and intervention remain the key to preventing undue costs. There is a pressing need to develop evidence‐based treatment pathways involving a multidisciplinary approach adapted to the local health care system to close the treatment gap and eventually reduce the undue cost …”

Health care practitioners’ perceptions of psychogenic nonepileptic seizures: A systematic review of qualitative and quantitative studies

“…Studies using different methodologies converge on the conclusion that PNES are best understood as a dissociative response to subjective internal or external stimuli . The prevalence of PNES remains somewhat uncertain but has been estimated at up to 50/100 000; the incidence of video‐electroencephalography (EEG) confirmed PNES has been determined as 4/100 000 per year …”