Department of Neurology, Charité - Universitätsmedizin Berlin, Charité Campus Mitte, Charitéplatz 1, 10177, Berlin, Berlin, Germany.
Department of Family and Pediatric Nursing, Faculty of Health Sciences, WrocławDepartment of Family Medicine, Wroclaw Medical University, Bartla 5 St., wyb. Ludwika, Pasteura1, Wroclaw, 51-618, 50-367, Poland.
BMC Neurol. 2024 Sep 6;24(1):322. doi: 10.1186/s12883-024-03842-6.
N-methyl-D-aspartate-receptor (NMDAR) encephalitis is a rare neurological autoimmune disease with severe neuropsychiatric symptoms during the acute phase. Despite good functional neurological recovery, most patients continue to experience cognitive, psychiatric, psychological, and social impairments years after the acute phase. However, the precise nature and evolving patterns over time of these long-term consequences remain unclear, and their implications for the well-being and quality of life of predominantly young patients have yet to be thoroughly examined.
SAPIENCE is a European multi-center (n = 3) prospective observational cohort study studying the long-term cognitive, psychiatric, psychological, and social outcome in patients with NMDAR encephalitis. The study consists of three interconnected levels. Level 1 comprises a qualitative interview and focus groups with patients and their caregivers. Level 2 consists of a condensed form of the interview, standardized questionnaires, and a detailed neuropsychological examination of patients. Level 3 involves an online survey that will be open to patients world-wide and explores patient-reported outcomes (PROMs), and patient-reported experiences (PREMs) in association with clinical and cognitive outcomes. Levels 1 to 3 will progressively contribute developing of structured interviews, survey questions, and treatment guidelines by informing one another.
SAPIENCE is an in-depth study of the long-term effects of NMDAR encephalitis and bridges the gap between standardized assessments and individual patient experiences, intending to improve patient care and to increase awareness of the psychosocial long-term consequences of the disease. Through collaboration of experts in clinical neurology and social and health psychology across Europe, SAPIENCE aims to create online assessment tools and formulate guidelines for patient-centered post-acute care that will help enhance the quality of life for patients and caregivers.
N-甲基-D-天冬氨酸受体（NMDAR）脑炎是一种罕见的神经自身免疫性疾病，在急性期伴有严重的神经精神症状。尽管神经功能有良好的恢复，但大多数患者在急性期后仍持续存在认知、精神、心理和社会障碍。然而，这些长期后果的确切性质和随时间演变的模式仍不清楚，其对主要为年轻患者的幸福感和生活质量的影响尚未得到彻底研究。
SAPIENCE 是一项欧洲多中心（n=3）前瞻性观察队列研究，旨在研究 NMDAR 脑炎患者的长期认知、精神、心理和社会结局。该研究由三个相互关联的层次组成。第 1 层包括对患者及其护理人员的定性访谈和焦点小组。第 2 层由访谈的浓缩形式、标准化问卷和患者详细的神经心理学检查组成。第 3 层涉及一项针对全球患者的在线调查，旨在探索患者报告的结局（PROMs）和患者报告的体验（PREMs）与临床和认知结局的关联。1 到 3 层将通过相互告知来逐步开发结构化访谈、调查问题和治疗指南。
SAPIENCE 是对 NMDAR 脑炎长期影响的深入研究，填补了标准化评估与个体患者体验之间的空白，旨在改善患者护理并提高对该疾病心理社会长期后果的认识。通过欧洲临床神经病学和社会与健康心理学专家的合作，SAPIENCE 旨在创建在线评估工具并制定以患者为中心的急性期后护理指南，以帮助提高患者和护理人员的生活质量。
