■管理功能性神经障碍(FND)的关键第一步是使用可理解的疾病模型进行积极的诊断和明确的解释。多学科团体教育会议是实现这一目标的一种方式,有一些证据表明他们可以增进理解,对进一步治疗的诊断和结果的信心。在许多情况下,疾病观念和污名会影响痛苦,功能,生活质量和参与。探索这些因素之间的关系可以导致对教育影响的更深入的理解。
■评估疾病认知的问卷,生活质量,心情,焦虑,合并症,治疗参与和污名化(既有经验也有预期)在之前完成,在区域神经科学中心为FND举行的多学科在线小组教育会议后1个月。还收集了关于因果归因和需求的自由文本数据。
■从2022年1月至2023年7月,有166名患者参加了在线教育课程;61名(37%)完成了陈述调查,42(25%)完成了会后调查,35(21%)完成了1个月的会后调查。患者报告了多种合并症,生活质量差,功能和高水平的污名。疾病感知分数表明FND具有威胁性,神秘而不可预测,个人或治疗对症状的控制较低。病患相干性/理解(平均差异2.27,p<0.01,95%CI1.22至4.23)和参与度(平均差异2.42,p<0.01,95%CI0.46至4.36)在疗程结束后增加。污名没有显著变化,苦恼,控制感或预期的歧视。自由文本分析显示,压力和创伤是最常见的因果归因,其次是身体疾病。患者要求个性化配方,实用的残疾建议,帮助向他人解释病情(例如,雇主),同伴支持和治疗。
■多学科小组FND教育课程可能会提高患者的理解和参与度。临床医生应考虑个性化配方的可能好处,并与实践和同行支持联系起来。需要进一步评估疾病认知的工作,例如适应FND的措施。
UNASSIGNED: A critical first step in managing functional neurological disorder (FND) is a positive diagnosis and clear explanation using an understandable illness model. Multidisciplinary group education sessions are one way to achieve this, with some evidence they improve understanding, confidence in diagnosis and outcomes with further treatment. In many conditions, illness perceptions and stigma affect distress, functioning, quality of life and engagement. Exploring relationships between these factors could lead to deeper understanding of the impact of education.
UNASSIGNED: Questionnaires assessing illness perceptions, quality of life, mood, anxiety, comorbidities, treatment engagement and stigma (both experienced and anticipated) were completed before, immediately and 1 month after a multidisciplinary online group education session for FND at a regional neurosciences centre. Free-text data on causal attributions and needs were also collected.
UNASSIGNED: 166 patients attended online education sessions from January 2022 to July 2023; 61 (37%) completed presession surveys, 42 (25%) completed postsession and 35 (21%) completed 1 month postsession surveys. Patients reported multiple comorbidities, poor quality of life, functioning and high levels of stigma. Illness perception scores indicated FND as threatening, mysterious and unpredictable, with low personal or treatment control over symptoms. Illness coherence/understanding (mean difference 2.27, p<0.01, 95% CI 1.22 to 4.23) and engagement (mean difference 2.42, p<0.01, 95% CI 0.46 to 4.36) increased after the session. There were no significant changes in stigma, distress, sense of control or anticipated discrimination. Free-text analysis revealed stress and trauma as the most common causal attributions, followed by physical illnesses. Patients requested personalised formulations, practical disability advice, help with explaining the condition to others (eg, employers), peer support and treatment.
UNASSIGNED: Multidisciplinary group FND education sessions potentially improve patient understanding and engagement. Clinicians should consider the possible benefits of personalised formulations and linking to practical and peer support. Further work assessing illness perceptions is needed, such as adapting measures for FND.