Stoyan Popkirov1, Timothy R Nicholson1, Bastiaan R Bloem1, Hannah R Cock1, Christopher P Derry1, Roderick Duncan1, Barbara A Dworetzky1, Mark J Edwards1, Alberto J Espay1, Mark Hallett1, Anthony E Lang1, John Paul Leach1, Alexander Lehn1, Aileen McGonigal1, Francesca Morgante1, David L Perez1, Markus Reuber1, Mark P Richardson1, Philip Smith1, Maria Stamelou1, Marina A J Tijssen1, Michele Tinazzi1, Alan J Carson1, Jon Stone1. 1. The Department of Neurology, University Hospital Knappschaftskrankenhaus, Ruhr University Bochum, Bochum, Germany (Popkirov); the Section of Cognitive Neuropsychiatry, Institute of Psychiatry, Psychology and Neuroscience, King's College London (Nicholson); the Department of Neurology, Radboud University Medical Centre, Donders Institute for Brain, Cognition, and Behaviour, Nijmegen, the Netherlands (Bloem); the Institute of Medical and Biomedical Education, St. George's University of London and Atkinson Morley Regional Neuroscience Centre, St. George's University Hospitals NHS Foundation Trust, London (Cock); the Department of Clinical Neurosciences, Western General Hospital, Edinburgh, United Kingdom (Derry); the Department of Neurology, University of Otago, Christchurch, New Zealand (Duncan); the Department of Neurology, Edward B. Bromfield Epilepsy Program, Brigham and Women's Hospital, Harvard Medical School, Boston (Dworetsky); the Institute of Molecular and Clinical Sciences, St. George's University of London (Edwards, Morgante); the Department of Neurology, Gardner Family Center for Parkinson Disease and Movement Disorders, University of Cincinnati (Espay); the Human Motor Control Section, National Institute of Neurological Disorders and Stroke, NIH, Bethesda, Md. (Hallett); the Morton and Gloria Shulman Movement Disorders Clinic and Edmond J. Safra Program in Parkinson's Disease, Toronto Western Hospital, Toronto (Lang); Queen Elizabeth University Hospital, University of Glasgow, Glasgow, United Kingdom (Leach); the Mater Centre for Neurosciences and School of Medicine, University of Queensland, Brisbane, Australia (Lehn); the Institut de Neurosciences des Systèmes, INSERM, Aix-Marseille Université, Marseille, France; the Department of Clinical Neurophysiology, Hôpital de la Timone, Assistance Publique-Hôpitaux de Marseille, Marseille, France (McGonigal); the Department of Clinical and Experimental Medicine, University of Messina, Messina, Italy (Morgante); the Departments of Neurology and Psychiatry, Functional Neurology Research Group, Massachusetts General Hospital, Harvard Medical School, Boston (Perez); the Academic Neurology Unit, University of Sheffield, Royal Hallamshire Hospital, Glossop Road, Sheffield, United Kingdom (Reuber); the Institute of Psychiatry, Psychology and Neuroscience, Kings College London (Richardson); the Department of Neurology, Alan Richens Epilepsy Unit, University Hospital of Wales, Cardiff, United Kingdom (Smith); the HYGEIA Hospital, Athens, Greece (Stamelou); the Neurology Clinic, Philipps University Marburg, Marburg, Germany (Stamelou); the University of Athens, Greece (Stamelou); the Department of Neurology, University Medical Center Groningen, University of Groningen, Groningen, the Netherlands (Tijssen); the Neurology Unit, Movement Disorders Division, University of Verona, Verona, Italy (Tinazzi); and the Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, United Kingdom (Carson, Stone).
Abstract
OBJECTIVE: Functional movement and seizure disorders are still widely misunderstood and receive little public and academic attention. This is in stark contrast to their high prevalence and levels of associated disability. In an exploratory observational study, the authors examined whether the relative lack of media coverage of functional neurological disorders is in part due to misidentification in "human interest" news stories. METHODS: Thirteen recent news stories from high-impact English-language media outlets that portrayed patients with complex symptoms either attributed to other diagnoses or presented as medical mysteries were identified using online keyword searches. All selected news stories contained video or still images displaying relevant symptoms. Cases were categorized into movement disorders or seizure disorders and were then independently assessed by 10 respective expert raters. For each category, one story of a patient whose symptoms were due to a well-recognized neurological disease was also included. Both the diagnostic category and the respective confidence level were reported by each rater for each case. The interrater agreement was calculated for each group of disorders. RESULTS: The raters confirmed almost unanimously that all presented news stories except the negative control cases portrayed misidentified functional movement or seizure disorders. The interrater agreement and average diagnostic confidence were high. CONCLUSIONS: Functional neurological disorders are often wrongly considered a rare medical curiosity of the past. However, these findings suggest that, while they are largely absent from public discourse, they often appear in the news incognito, hiding in plain sight.
OBJECTIVE: Functional movement and seizure disorders are still widely misunderstood and receive little public and academic attention. This is in stark contrast to their high prevalence and levels of associated disability. In an exploratory observational study, the authors examined whether the relative lack of media coverage of functional neurological disorders is in part due to misidentification in "human interest" news stories. METHODS: Thirteen recent news stories from high-impact English-language media outlets that portrayed patients with complex symptoms either attributed to other diagnoses or presented as medical mysteries were identified using online keyword searches. All selected news stories contained video or still images displaying relevant symptoms. Cases were categorized into movement disorders or seizure disorders and were then independently assessed by 10 respective expert raters. For each category, one story of a patient whose symptoms were due to a well-recognized neurological disease was also included. Both the diagnostic category and the respective confidence level were reported by each rater for each case. The interrater agreement was calculated for each group of disorders. RESULTS: The raters confirmed almost unanimously that all presented news stories except the negative control cases portrayed misidentified functional movement or seizure disorders. The interrater agreement and average diagnostic confidence were high. CONCLUSIONS: Functional neurological disorders are often wrongly considered a rare medical curiosity of the past. However, these findings suggest that, while they are largely absent from public discourse, they often appear in the news incognito, hiding in plain sight.
Entities:
Keywords:
Functional Movement Disorders; Functional Neurological Disorder; Media; Psychogenic Movement Disorders; Psychogenic Nonepileptic Seizures; Stigma
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