Psycho-social Impact of Anti-NMDAR Encephalitis (SAPIENCE)

Civil Hospices of Lyon

Status: Completed

Conditions: NMDAR Antibody-associated Auto-immune Encephalitis

Treatments: Other: standardized and validated surveys

Study type: Observational

Funder types: Other

Identifiers

NCT05954468

69HCL21_0628

Details and patient eligibility

About

NMDA receptor encephalitis is a rare neurological autoimmune disease with severe neuropsychiatric symptoms, but a typically good functional neurological outcome. The majority of patients experience long-term cognitive, psychological and social impairments that have significant consequences for their well-being and quality of life. However, as the disease was only recently discovered (Dalmau and al. Annals of neurology, 2007), this psycho-social impact has not been studied systematically and the resulting consequences for patients are not adequately appreciated.

The proposed study aims at characterizing the cognitive and psycho-social long-term consequences of this rare disease. Our main hypothesis is that NMDAR encephalitis has a persistent and clinically relevant impact on the patients' long-term cognitive, psychological and social well-being. Furthermore, we hypothesize that longterm subjective outcomes depend on both internal and external factors, such as acute disease course, access to post-acute care, caregiver support, personal coping strategies, or access to health education resources and peer group support.

Enrollment: 10 patients

Sex: All

Ages: 18+ years old

Volunteers: No Healthy Volunteers

Inclusion criteria

• Patients with anti-NMDAR encephalitis
• Year ≥ 18 ans
• Patients affiliated to the social security scheme

Exclusion criteria

• Patients with no anti-NMDAR encephalitis
• Minor patient
• Patient under guardianship or curatorship
• Patient with preexisting neurological symptoms