SAPIENCE Project - Social and Psychological Long-Term Impact of Nmda Receptor Encephalitis

NMDA receptor encephalitis (NMDARE) is a rare autoimmune disease that primarily affects young people (median age at disease onset: 21 years). It leads to severe neurological and neuropsychiatric symptoms such as hallucinations, seizures, and impaired consciousness. Despite these sometimes dramatic courses, many patients achieve good functional neurological recovery.

However, long-term studies show that the majority of affected individuals experience persistent cognitive, psychological, and social impairments, which can significantly impact well-being as well as participation in professional and educational life. This is particularly problematic because the disease often occurs in young adulthood—an important phase for education, career entry, and social development. Since the first description of the disease in 2007, the psychosocial burden has not yet been systematically investigated, and the impact on quality of life as well as the long-term care of patients has so far been insufficiently considered.

The aim of the SAPIENCE (Social and psychological long-term impact of NMDA receptor encephalitis) project is to systematically investigate the long-term cognitive, psychological, and psychosocial consequences of NMDARE. This international, three-stage study combines qualitative and quantitative methods to comprehensively assess the living conditions of patients and their families. The recruitment of patients takes place at study centers in Berlin (Charité), Lyon (France), and Barcelona (Spain).

Level 1: Semi-structured interviews and focus groups with patients and family members to assess personal experiences, burdens, and coping strategies.

Level 2: Based on the findings of Level 1, a short version of the semi-structured interview will be developed to capture patients’ experiences. In addition, patient-centered outcomes (Patient-Reported Outcome Measures, PROMs) such as sleep, fatigue, and depression as well as potential outcome predictors such as memory, problem solving, response inhibition, and spatial navigation will be examined.

Level 3: Level 3 will be conducted online and will be open to patients worldwide to investigate the influence of different healthcare systems and cultural factors on the psychosocial everyday worlds of patients.

The goal is to develop new assessment tools, to formulate recommendations for outpatient follow-up care, and to derive measures to improve the quality of life for patients and their families based on the results.

Involvement of patients and family members

The active involvement of patients and family members had a major influence on the SAPIENCE study and has significantly shaped its orientation and relevance. Patients and their families were included in several key phases to ensure that their perspectives, needs, and everyday experiences were considered in the best possible way.

During the Level 1 – Interviews and Focus Groups, patients and family members reported their symptoms, burdens, needs, and experiences with healthcare services in semi-structured interviews and focus groups. These qualitative data formed the basis for developing the research questions in Levels 2 and 3 and ensured a consistently patient- and family-centered orientation of the study.

Collaboration with patient organizations

The SAPIENCE project cooperates closely with national and international patient organizations, including Encephalitis International. These organizations have supported particularly in Level 1 to identify relevant topics and interview questions. This ensured that the data collected truly reflected the real burdens, needs, and experiences of patients. Moreover, the patient organizations support the recruitment for Level 3 and contribute to the dissemination of study results. Since Level 3 is designed as an online survey, this collaboration enables access to a larger and internationally diverse patient sample, including patients from low- and middle-income countries (LMICs). This not only increases the validity and generalizability of the results but also strengthens the impact of the active patient involvement, as the perspectives of diverse groups of affected individuals are included and the findings can support globally relevant practical recommendations.

Preliminary findings

The study’s findings to date highlight that involving patients has contributed significantly to an improvement of both scientific quality and clinical applicability. For the first time, the psychological burden of family members has been systematically assessed, and the effects of delayed diagnosis on patients and families have been clearly elaborated. Additionally, the need for structured psychosocial support services has also been highlighted, and the high value of interdisciplinary care could be confirmed, which is an essential foundation for developing future care guidelines. Through this close collaboration, SAPIENCE contributes to a better understanding of the long-term consequences of the disease, the development of patient-centered assessments, and the formulation of practical recommendations for high-quality, interdisciplinary care.