MacDuffie Katherine E, Grubbs Lindsey, Best Tammyjo, LaRoche Suzette, Mildon Bridget, Myers Lorna, Stafford Elizabeth, Rommelfanger Karen S
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.
CNS Spectr. 2020 Dec 3:1-6. doi: 10.1017/S1092852920002084.
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.
对功能性神经障碍(FND)患者的污名化给诊断、治疗和研究带来了障碍。缺乏生物标志物以及症状可能被误解、无效化或忽视,这会让患者、家属和医护人员不知所措。污名化加剧了患者及其家属的痛苦和未满足的需求,并可能导致临床管理不善以及医疗资源的长期重复使用。我们目前对FND污名化的理解来自于记录医护人员所经历的挫折以及患者所经历的令人痛苦的医疗互动的调查。然而,对于FND污名化的根源、其在不同医疗环境中的普遍性、对患者健康结果的影响以及减少污名化的最佳方法,我们知之甚少。在本文中,我们提出了一项研究议程,旨在更好地了解污名化的普遍性和背景,阐明其对患者和医护人员的影响,并推广减少污名化的最佳实践。