Objective: The goal of this study was to explore perceptions of patients with functional movement disorder (FMD) about stigma, experiences in the healthcare system and psychosocial support structures.

Background: There is poor access to specialized FMD assessment and treatment centers. Understanding patients’ experiences in obtaining a diagnosis, communicating with healthcare professionals and getting support is needed to help inform future care planning.

Method: Semi-structured qualitative interviews were conducted with twelve patients referred to a multidisciplinary FMD clinic at a single academic center. Patients also completed standardized psychometric measures and the Neurological Quality of Life (N-QoL) stigma scale. Interview transcripts were coded and analyzed using inductive methods.

Results: Patients had an average of 47 (SD 15.7) years, were predominantly female (75%) and Caucasian (75%). Presenting symptom was functional tremor (n=5), gait (n=4), dystonia (n=2) and speech (n=1), with symptom duration ranging from 6 months to >10 years. On the N-QoL stigma scale, the average T-score was 59.5, one standard deviation below the expected range for healthy adults. Main identified themes in interviews were (1) perceived importance of medical events as causal to FMD symptoms; (2) struggles to obtain an accurate diagnosis, (3) lack of physician knowledge or understanding of FMD, (4) difficulties with accessing care and resources, (5) mixed reactions from social networks (either very supportive or very unsupportive), and (6) the perception of FMD as a chronic medical illness.

Conclusion: Findings from our study highlight the overall negative patient experience with FMD, from difficulties in getting a diagnosis, communicating with physicians, to a lack of treatment resources. Furthermore, many felt unsupported by their social networks and a high level of stigma related to their diagnosis. Although qualitative research in functional neurologic disorders has been scarce, a previous study in the UK identified similar themes surrounding the challenges of receiving a diagnosis and communication about the disorder¹. Given the high prevalence of FMD, there is an urgent need for education of physicians and other healthcare providers about best practices in diagnosis and management to improve the patient experience and optimize treatment outcomes.

References: 1. Nielsen G, Buszewicz M, Edwards MJ, Stevenson F. A qualitative study of the experiences and perceptions of patients with functional motor disorder. Disabil Rehabil. 2019:1-6.

« Back to MDS Virtual Congress 2020

MDS Abstracts - https://www.mdsabstracts.org/abstract/perceived-stigma-in-patients-with-functional-movement-disorder-a-qualitative-study/