NMDAR Antibody-associated Auto-immune Encephalitis
Conditions
Keywords
auto-immune encephalitis, NMDA receptor encephalitis, Health-related quality of life, psyco-social impact, cognitive consequence
Brief summary
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.
Interventions
OTHERstandardized and validated surveys
To evaluate the cognitive and psycho-social long term impact of a NMDAR encephalitis, we will collect the data using specific interview assessments such as the PROMS (Patient-reported Outcome Measures Information System) and PREMS (Patient-reported experiences measures) as well as we will check the cognitive performance in order to combine the expertise from clinical neurology, social & health psychology
Sponsors
Hospices Civils de Lyon
Study design
Observational model
COHORT
Time perspective
RETROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
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
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Cognitive and psycho-social analyses of patients with NMDAR encephalitis. | At study completion in an average of 12 months | The analyze will focus on the post-acute phase of the disease. |
Countries
France
Outcome results
None listed