Disentangling Stigma from Functional Neurological Disorders: Conference Report and Roadmap for the Future

Abstract

A multidisciplinary expert review of key issues and future directions from the conference “Controversial labels and clinical uncertainties: psychogenic disorders, conversion disorder, and functional symptoms.”On October 9 and 10, 2015, a conference entitled “Controversial labels and clinical uncertainties: psychogenic disorders, conversion disorder, and functional symptoms” was held at the Center for Ethics, Emory University, Atlanta, GA, USA. This conference brought together a select group of 30 distinguished thought leaders and practitioners, including ethicists, researchers, clinicians, humanities scholars, and advocates to discuss the unique challenges and controversies related to the diagnosis, treatment, and stigma for patients with what is currently recognized as functional (“psychogenic”) neurological disorders. Our group of experts explored the conflicts and ethical tensions within health care that must be addressed in order to advance care for these disorders. What follows is a reflection on the conversations between conference attendees outlining key challenges and value conflicts in the diagnosis and treatment of patients with functional disorders. With this report, we aim to provide a roadmap for reducing stigma and improving care for functional neurological disorders (FND). A path forward would involve (1) setting a multifactorial research agenda that equally prioritized access to effective psychotherapy as well as identification of novel biomarkers; (2) empowering patients with FND to be heard and to drive changes in care; and (3) reducing isolation for clinicians by providing formal training and setting up multidisciplinary care teams and support networks.

Exploring psychiatrists’ perspectives of working with patients with dissociative seizures in the UK healthcare system as part of the CODES trial: a qualitative study

“…Participants generally expressed concordant views across the range of interview questions, suggesting that issues surrounding DS are very apparent to the professionals working closely with this population. Views broadly support previous research that describes DS patients as a heterogeneous population with complex presentations and demanding HCP input,8 10 21 as well as the need for an improvement in education and awareness of DS by HCPs 22…”

“…To address this issue, better resources and educational materials need to be made available for those who are likely to be working with DS, both for future clinicians and clinicians currently in practice. Rommelfanger et al 22 described a level of ‘professional isolation’ often felt among care providers working with functional symptoms due to a distinct lack of formalised training and reported on the need for a shift in priorities to support clinicians working with patients with FNDs. This could start as early as medical school but should also involve the development of sufficient resources to support the multidisciplinary approach that is often required to treat FNDs.…”

Functional Neurological Disorders as Seen by a Cohort of General Practitioners in Northern Italy: Evidence From an Online Survey

“…This suggests that the GPs were more likely to describe the cause of FND as a change in nervous system function rather than structure ( 26 ). Psychology-related terms (e.g., “Somatization disorders,” “Unspecific anxiety syndrome”) were more frequently selected than “Functional neurological disorder.” Previous studies demonstrated that patients with FND often feel disbelieved or misunderstood about their condition when health care professionals explain the disorder in terms of psychological difficulties, which undermines patient compliance ( 27 ). Conversely, the term “Functional neurological disorders” is preferred by both patients and health professionals since it is neutral with respect to the etiology of the disease, refers to the way in which symptoms manifest, increases a patient's understanding and acceptance of diagnosis, and reduces the fear of social stigma ( 2 , 26 – 28 ).…”

Health‐related stigma of noncommunicable neurological disease in rural adult populations: A scoping review

“…Rommelfanger et al () speaks to the concept of healthcare professional stigma in practice in terms of functional neurological disorders (i.e., neurological symptoms with a psychiatric cause). The authors describe these patients as representing a “risk” for some healthcare providers due to extra time required for routine checks, and at times a lack of confidence in adequate disease expertise and resources for care.…”