Division of Neurology, Department of Internal Medicine, Nihon University School of Medicine, Tokyo, Japan.
Medicine (Baltimore). 2023 Oct 6;102(40):e35162. doi: 10.1097/MD.0000000000035162.
Autoimmune encephalitis (AE) subacutely causes severe and multiple symptoms; however, most patients achieve neurologically favorable outcomes. Despite the substantial recovery in motor function, persistent impairments in mental/social aspects lasting for several years have been recognized, and its potential effect on health-related quality of life (HRQOL) has been argued. To urgently evaluate the long-term effects of AE on patients' HRQOL, we investigated patient-oriented long-term outcomes and assessed the HRQOL of patients with AE. Data of patients who were diagnosed with probable/definite AE, defined by Graus AE criteria 2016, and treated at our hospital between January 2011 and October 2020 were retrospectively retrieved. Their long-term (≥2 years) outcomes, which included various sequelae and handicaps in social activities such as returning to previous work/school life through structured interview forms, were evaluated, and the HRQOL was assessed using Neuro-QOL battery. We identified 32 patients who met the Graus AE criteria 2016 and eventually enrolled 21 patients in the study. The median interval between disease onset and survey period was 63 (25-156) months, and 43% of the patients had persistent neuropsychiatric symptoms, including memory disorders, personality changes, and seizures. No more than 71% returned to their previous work/school life. Although most of the patients had global QOL within normal limits, 48% had social QOL under normal limits. Patients with sequelae were significantly less likely to return to previous work/school and had worse global/social quality of life than patients without sequelae. In conclusion, nearly half of patients with AE had social QOL under normal limits 5 years after onset. The difficulty in returning to work/school and a worse HRQOL were notable in patients with sequelae.
自身免疫性脑炎（AE）亚急性起病，导致严重且多样的症状；然而，大多数患者神经功能预后良好。尽管运动功能有显著恢复，但已认识到持续存在数年的精神/社会方面的损害，其对健康相关生活质量（HRQOL）的潜在影响也受到了争论。为了迫切评估 AE 对患者 HRQOL 的长期影响，我们调查了以患者为导向的长期结局，并评估了 AE 患者的 HRQOL。我们回顾性地检索了 2011 年 1 月至 2020 年 10 月期间在我院确诊为可能/明确 AE（根据 2016 年 Graus AE 标准定义）并接受治疗的患者的资料。通过结构化访谈形式评估了他们的长期（≥2 年）结局，包括在社会活动中回归既往工作/学校生活等方面的各种后遗症和残疾，并使用神经生活质量问卷（Neuro-QOL）评估了 HRQOL。我们共确定了 32 名符合 2016 年 Graus AE 标准的患者，最终纳入了 21 名患者进行研究。发病至调查期间的中位数间隔为 63（25-156）个月，43%的患者有持续性神经精神症状，包括记忆障碍、人格改变和癫痫发作。不超过 71%的患者恢复到既往工作/学校生活。尽管大多数患者的总体 QOL 在正常范围内，但仍有 48%的患者的社会 QOL 低于正常水平。有后遗症的患者较无后遗症的患者更不可能回归既往工作/学校，且总体/社会生活质量更差。综上，AE 患者在发病后 5 年仍有近一半的患者社会 QOL 低于正常水平。有后遗症的患者重返工作/学校困难，HRQOL 更差。
