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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: [email protected]
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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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References

Ejareh Dar, M, Kanaan, RA. Uncovering the etiology of conversion disorder: insights from functional neuroimaging. Neuropsychiatr Dis Treat. 2016;12:143–153.Google ScholarPubMed
Rommelfanger, KS, Factor, SA, LaRoche, S, Rosen, P, Young, R, Rapaport, MH. Disentangling stigma from functional neurological disorders: conference report and roadmap for the future. Front Neurol. 2017;8:106CrossRefGoogle ScholarPubMed
Feedback—Functional/Dissociative Symptoms. Functional Neurological Disorder (FND): A Patient’s Guide Web Site. https://www.neurosymptoms.org/feedback/4594358039. Accessed 2020.Google Scholar
Martiros, M, Myers, L. In Our Own Words: Stories of Those Living with, Learning from and Overcoming the Challenges of Psychogenic Non-Epileptic Seizures (PNES). CreateSpace Independent Publishing Platform; 2015.Google Scholar
Duncan, R, Razvi, S, Mulhern, S. Newly presenting psychogenic nonepileptic seizures: incidence, population characteristics, and early outcome from a prospective audit of a first seizure clinic. Epilepsy Behav. 2011;20(2):308–311.CrossRefGoogle ScholarPubMed
Fernholm, R, Holzmann, MJ, Wachtler, C, Szulkin, R, Carlsson, AC, Pukk, HK. Patient-related factors associated with an increased risk of being a reported case of preventable harm in first-line health care: a case-control study. BMC Fam Pract. 2020;21(1):20CrossRefGoogle ScholarPubMed
Rommelfanger, KS. Attitudes on mind over matter: physician views on the role of placebo in psychogenic disorders. AJOB Neurosci. 2013;4(3):9–15.CrossRefGoogle Scholar
Monzoni, CM, Duncan, R, Grunewald, R, Reuber, M. How do neurologists discuss functional symptoms with their patients: a conversation analytic study. J Psychosom Res. 2011;71(6):377–383.CrossRefGoogle ScholarPubMed
Stone, J, Carson, A, Hallett, M. Explanation as treatment for functional neurologic disorders. Handb Clin Neurol. 2016;139:543–553.CrossRefGoogle ScholarPubMed
Rao, D, Choi, SW, Victorson, D, et al. Measuring stigma across neurological conditions: the development of the stigma scale for chronic illness (SSCI). Qual Life Res. 2009;18(5):585–595.CrossRefGoogle Scholar
LaFaver, K, Lang, AE, Stone, J, et al. Opinions and clinical practices related to diagnosing and managing functional (psychogenic) movement disorders: changes in the last decade. Eur J Neurol. 2020;27(6):975–984.CrossRefGoogle ScholarPubMed
Gilmour, GS, Nielsen, G, Teodoro, T, et al. Management of functional neurological disorder. J Neurol. 2020;267:2164–2172.CrossRefGoogle ScholarPubMed
Monzoni, CM, Duncan, R, Grunewald, R, Reuber, M. Are there interactional reasons why doctors may find it hard to tell patients that their physical symptoms may have emotional causes? A conversation analytic study in neurology outpatients. Patient Educ Couns. 2011;85(3):e189–e200.CrossRefGoogle ScholarPubMed
Tolchin, B, Baslet, G, Dworetzky, B. Psychogenic seizures and medical humor: jokes as a damaging defense. Epilepsy Behav . 2016;64(Pt A):26–28.CrossRefGoogle ScholarPubMed
Burke, MJ. “It’s all in your head”—medicine’s silent epidemic. JAMA Neurol. 2019;76(12):1417–1418.CrossRefGoogle ScholarPubMed
Myers, L, Jones, J, Boesten, N, Lancman, M. Psychogenic non-epileptic seizures (PNES) on the Internet: online representation of the disorder and frequency of search terms. Seizure. 2016;40:114–122.CrossRefGoogle ScholarPubMed
Carson, A, Lehn, A. Chapter 5: epidemiology. In: Handbook Clinical Neurology. 2016/10/11 ed. Vol. 139 Elsevier, Cambridge MA; 2016:47–60.Google Scholar
Stone, J, Carson, A, Duncan, R, et al. Who is referred to neurology clinics?—The diagnoses made in 3781 new patients. Clin Neurol Neurosurg. 2010;112(9):747–751.CrossRefGoogle ScholarPubMed
Robson, C, Lian, OS. “Blaming, shaming, humiliation”: stigmatising medical interactions among people with non-epileptic seizures. Wellcome Open Res. 2017;2:55CrossRefGoogle ScholarPubMed
Maurer, CW, LaFaver, K, Ameli, R, Epstein, SA, Hallett, M, Horovitz, SG. Impaired self-agency in functional movement disorders. Neurology. 2016;87(6):564–570.Google ScholarPubMed
Rawlings, GH, Reuber, M. Health care practitioners’ perceptions of psychogenic nonepileptic seizures: a systematic review of qualitative and quantitative studies. Epilepsia. 2018;59(6):1109–1123.CrossRefGoogle ScholarPubMed
Shneker, BF, Elliott, JO. Primary care and emergency physician attitudes and beliefs related to patients with psychogenic nonepileptic spells. Epilepsy Behav. 2008;13(1):243–247.CrossRefGoogle ScholarPubMed
O’Sullivan, SS, Sweeney, BJ, McNamara, B. The opinion of the general practitioner toward clinical management of patients with psychogenic nonepileptic seizures. Epilepsy Behav. 2006;8(1):256–260.CrossRefGoogle ScholarPubMed
Rommelfanger, KS. Opinion: a role for placebo therapy in psychogenic movement disorders. Nat Rev Neurol. 2013;9(6):351–356.CrossRefGoogle ScholarPubMed
Grubbs, L, Rommelfanger, KS. Placebo for psychogenic disorders. In: LSM, Johnson, Rommelfanger, KS, eds. The Routledge Handbook of Neuroethics . 1st ed. New York: Taylor & Francis Group; 2017:18.Google Scholar
Whitehead, K, Kandler, R, Reuber, M. Patients’ and neurologists’ perception of epilepsy and psychogenic nonepileptic seizures. Epilepsia. 2013;54(4):708–717.CrossRefGoogle ScholarPubMed
Whitehead, K, Reuber, M. Illness perceptions of neurologists and psychiatrists in relation to epilepsy and nonepileptic attack disorder. Seizure. 2012;21(2):104–109.CrossRefGoogle ScholarPubMed
Worsley, C, Whitehead, K, Kandler, R, Reuber, M. Illness perceptions of health care workers in relation to epileptic and psychogenic nonepileptic seizures. Epilepsy Behav. 2011;20(4):668–673.CrossRefGoogle ScholarPubMed
Rawlings, GH, Brown, I, Stone, B, Reuber, M. Written accounts of living with epilepsy or psychogenic nonepileptic seizures: a thematic comparison. Qual Health Res. 2018;28(6):950–962.CrossRefGoogle ScholarPubMed
Rawlings, GH, Brown, I, Reuber, M. Deconstructing stigma in psychogenic nonepileptic seizures: an exploratory study. Epilepsy Behav. 2017;74:167–172.CrossRefGoogle ScholarPubMed
Molina, Y, Choi, SW, Cella, D, Rao, D. The Stigma Scale for Chronic Illnesses 8-Item Version (SSCI-8): development, validation and use across neurological conditions. Int J Behav Med. 2013;20(3):450–460.CrossRefGoogle ScholarPubMed
Rao, D, Elshafei, A, Nguyen, M, Hatzenbuehler, ML, Frey, S, Go, VF. A systematic review of multi-level stigma interventions: state of the science and future directions. BMC Med. 2019;17(1):41CrossRefGoogle ScholarPubMed
Gelauff, JM, Carson, A, Ludwig, L, Tijssen, MAJ, Stone, J. The prognosis of functional limb weakness: a 14-year case-control study. Brain. 2019;142(7):2137–2148.CrossRefGoogle ScholarPubMed
Edwards, M. Functional neurological disorder: an ethical turning point for neuroscience. Brain. 2019;142(7):1855–1857.CrossRefGoogle ScholarPubMed
Espay, AJ, Aybek, S, Carson, A, et al. Current concepts in diagnosis and treatment of functional neurological disorders. JAMA Neurol. 2018;75(9):1132–1141.CrossRefGoogle ScholarPubMed
Fouche, M, Hartwig, L, Pretorius, C. Management of uncertainty in the diagnosis communication of psychogenic nonepileptic seizures in a South African context. Epilepsy Behav. 2019;98(Pt A):45–52.CrossRefGoogle Scholar
Korman, GP, Sarudiansky, M, Lanzillotti, AI, et al. Long-term outcome in a sample of underprivileged patients with psychogenic nonepileptic seizures (PNES) living in Argentina. Epilepsy Behav. 2019;94:183–188.CrossRefGoogle Scholar
Anderson, KE, Gruber-Baldini, AL, Vaughan, CG, et al. Impact of psychogenic movement disorders versus Parkinson’s on disability, quality of life, and psychopathology. Movement Disord. 2007;22(15):2204–2209.CrossRefGoogle ScholarPubMed
Phillips, R, Benoit, C, Hallgrimsdottir, H, Vallance, K. Courtesy stigma: a hidden health concern among front-line service providers to sex workers. Sociol Health Illness. 2011;34(5):681–696.CrossRefGoogle ScholarPubMed
Nyblade, L, Stockton, MA, Giger, K, et al. Stigma in health facilities: why it matters and how we can change it. BMC Med. 2019;17(1):25CrossRefGoogle ScholarPubMed
Collins, RL, Wong, EC, Cerully, JL, Schultz, D, Eberhart, NK. Interventions to Reduce Mental Health Stigma and Discrimination: A Literature Review to Guide Evaluation of California’s Mental Health Prevention and Early Intervention Initiative. Monica, CA: RAND Corporation; 2012.Google Scholar
Corrigan, PW, Morris, SB, Michaels, PJ, Rafacz, JD, Rüsch, N. Challenging the public stigma of mental illness: a meta-analysis of outcome studies. Psychiatric Serv. 2012;63(10):963–973.CrossRefGoogle ScholarPubMed
Brister, T, Cavaleri, M, Olin, S, Shen, S, Burns, B, Hoagwood, K. An evaluation of the NAMI basics program. J Child Family Stud. 2011;21(3):439–442.CrossRefGoogle Scholar
Dixon, L, Lucksted, A, Medoff, D, et al. Outcomes of a randomized study of a peer-taught family-to-family education program for mental illness. Psychiatr Serv. 2011;62(6):591–597.CrossRefGoogle ScholarPubMed
Gronholm, PC, Henderson, C, Deb, T, Thornicroft, G. Interventions to reduce discrimination and stigma: the state of the art. Soc Psychiatry Psychiatr Epidemiol. 2017;52(3):249–258.CrossRefGoogle ScholarPubMed
Lehn, A, Bullock-Saxton, J, Newcombe, P, Carson, A, Stone, J. Survey of the perceptions of health practitioners regarding functional neurological disorders in Australia. J Clin Neurosci. 2019;67:114–123.CrossRefGoogle ScholarPubMed
Montegomery, T, Berger, Z. How To Change Organizational Culture [Internet]; 2020. Podcast: 36 min 4s. https://edhub.ama-assn.org/ama-journal-of-ethics/audio-player/18260157.Google Scholar
Silverwood, V, Chew-Graham, C, Raybould, I, Thomas, B, Peters, S. “If it’s a medical issue I would have covered it by now”: learning about fibromyalgia through the hidden curriculum: a qualitative study. BMC Med Educ. 2017;17(1):160CrossRefGoogle ScholarPubMed
Klinke, ME, Hjartardottir, TE, Hauksdottir, A, Jonsdottir, H, Hjaltason, H, Andresdottir, GT. Moving from stigmatization toward competent interdisciplinary care of patients with functional neurological disorders: focus group interviews. Disabil Rehabil. 2019;1–10.Google ScholarPubMed
Mehta, N, Clement, S, Marcus, E, et al. Evidence for effective interventions to reduce mental health-related stigma and discrimination in the medium and long term: systematic review. Br J Psychiatry. 2015;207(5):377–384.CrossRefGoogle ScholarPubMed
Thornicroft, G, Mehta, N, Clement, S, et al. Evidence for effective interventions to reduce mental-health-related stigma and discrimination. Lancet. 2016;387(10023):1123–1132.CrossRefGoogle ScholarPubMed
Corrigan, PW, Penn, D. Lessons from social psychology on discrediting psychiatric stigma. Am Psychol. 1999;54(9):765–776.CrossRefGoogle ScholarPubMed
Penn, D, Corrigan, PW. The effects of stereotype suppression on psychiatric stigma. Schizophrenia Res. 2002;55(3):269–276.CrossRefGoogle ScholarPubMed