Said Yana, Ladakis Dimitrios C, Lefelar Julia M, Khazen Jenny M, Gould Jennifer, Fitzgerald Kathryn C, Sotirchos Elias S
Department of Neurology, Johns Hopkins University School of Medicine, Baltimore, MD, USA.
The MOG Project, Olney, MD, USA.
Mult Scler J Exp Transl Clin. 2024 Aug 23;10(3):20552173241274605. doi: 10.1177/20552173241274605. eCollection 2024 Jul-Sep.
There is a paucity of studies examining quality of life (QoL) in people with myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD).
A cross-sectional, online, self-administered survey was distributed. Data elements included demographic and clinical characteristics, and QoL in Neurological Disorders (Neuro-QoL) short form questionnaires. Neuro-QoL domain scores were compared to reference populations, yielding standardized T-scores. Symptom severity was categorized as mild, moderate, or severe, using standard Neuro-QoL cut points.
A total of 259 participants completed the survey. Neuro-QoL domain impairment was present in a significant proportion of respondents (anxiety: 58.1%, depression: 30.7%, stigma 29.8%, cognition: 58.5%, social function: 57.7%). T-scores were significantly worse than the reference population for anxiety (p<0.001), stigma (p=0.005), cognitive function (p<0.001) and social interactions (p<0.001). There was no clear association between QoL domains and demographics, disease-modifying therapy class, or type of clinical presentation. A relapsing vs monophasic disease course was associated with worse anxiety, stigma, cognition, and social interactions (p<0.05).
People with MOGAD may exhibit impairment in multiple domains of QoL. Practicing clinicians should be aware of this burden in MOGAD. Further research is needed to better understand factors associated with QoL impairment in MOGAD.
关于髓鞘少突胶质细胞糖蛋白抗体相关疾病（MOGAD）患者生活质量（QoL）的研究较少。
开展了一项横断面在线自填式调查。数据元素包括人口统计学和临床特征，以及神经疾病生活质量（Neuro-QoL）简表问卷中的生活质量。将Neuro-QoL领域得分与参考人群进行比较，得出标准化T分数。使用标准的Neuro-QoL切点将症状严重程度分为轻度、中度或重度。
共有259名参与者完成了调查。相当一部分受访者存在Neuro-QoL领域损害（焦虑：58.1%，抑郁：30.7%，耻辱感：29.8%，认知：58.5%，社会功能：57.7%）。焦虑（p<0.001）、耻辱感（p=0.005）、认知功能（p<0.001）和社会交往（p<0.001）的T分数显著低于参考人群。生活质量领域与人口统计学、疾病修饰治疗类别或临床表现类型之间没有明显关联。复发型与单相病程与更严重的焦虑、耻辱感、认知和社会交往相关（p<0.05）。
MOGAD患者可能在多个生活质量领域表现出损害。执业临床医生应意识到MOGAD患者的这种负担。需要进一步研究以更好地了解与MOGAD患者生活质量损害相关的因素。
