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Stigma and functional neurological disorder: a research agenda targeting the clinical encounter

Published online by Cambridge University Press:  03 December 2020

Katherine E. MacDuffie ,
Lindsey Grubbs ,
Tammyjo Best ,
Suzette LaRoche ,
Bridget Mildon Open the ORCID record for Bridget Mildon [Opens in a new window] ,
Lorna Myers ,
Elizabeth Stafford  and
Karen S. Rommelfanger Open the ORCID record for Karen S. Rommelfanger [Opens in a new window]
Katherine E. MacDuffie
Affiliation:
Department of Speech & Hearing Sciences, University of Washington, Seattle, Washington, USA The Treuman Katz Center for Pediatric Bioethics, Seattle Children’s Hospital, Seattle, Washington, USA
Lindsey Grubbs
Affiliation:
Berman Institute of Bioethics, John Hopkins University, Baltimore, Maryland, USA
Tammyjo Best
Affiliation:
Brain Health Center, Emory University Hospital, Atlanta, Georgia, USA
Suzette LaRoche
Affiliation:
Department of Neurology, Emory University, Asheville, South Carolina, USA Epilepsy Center, The Mission Health, Asheville, South Carolina, USA
Bridget Mildon
Affiliation:
FND Hope International, Salmon, Idaho, USA
Lorna Myers
Affiliation:
Northwest Regional Epilepsy Group, New York, New York, USA
Elizabeth Stafford
Affiliation:
National Alliance on Mental Illness, Arlington, Virginia, USA
Karen S. Rommelfanger*
Affiliation:
Center of Ethics Neuroethics Program, Departments of Neurology, Psychiatry, and Behavioral Sciences, Emory University, Atlanta, Georgia, USA
*
*Author for correspondence: Karen S. Rommelfanger Email: krommel@emory.edu
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Abstract

Stigma against patients with functional neurological disorder (FND) presents obstacles to diagnosis, treatment, and research. The lack of biomarkers and the potential for symptoms to be misunderstood, invalidated, or dismissed can leave patients, families, and healthcare professionals at a loss. Stigma exacerbates suffering and unmet needs of patients and families, and can result in poor clinical management and prolonged, repetitive use of healthcare resources. Our current understanding of stigma in FND comes from surveys documenting frustration experienced by providers and distressing healthcare interactions experienced by patients. However, little is known about the origins of FND stigma, its prevalence across different healthcare contexts, its impact on patient health outcomes, and optimal methods for reduction. In this paper, we set forth a research agenda directed at better understanding the prevalence and context of stigma, clarifying its impact on patients and providers, and promoting best practices for stigma reduction.

Keywords

Functional neurological disorderprovider perceptionsconversion disorderPNESattitudestraining
Type
Review
Information
CNS Spectrums , Volume 26 , Issue 6: Special Issue: Functional Neurological Disorder , December 2021 , pp. 587 - 592
Copyright
© The Author(s), 2020. Published by Cambridge University Press

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