Patient-Reported Experiences of Long-Term Recovery and Persistent Psychosocial Burden in NMDAR Encephalitis.
6 affiliations
- 1Department of Neurology and Experimental Neurology, Charité Universitätsmedizin Berlin, Germany.
- 2Fundació de Clínic per a la Recerca Biomèdica (FCRB) - Institut d'Investigacions Biomèdiques August Pi i Sunyer, Barcelona, Spain.
- 3Division of Research Methodology, Department of Nursing, Faculty of Nursing and Midwifery, Wrocław Medical University, Poland.
- 4Université Lyon 1, Hospices Civils de Lyon, INSERM, CNRS, French Reference Center on Paraneoplastic Neurological Diseases and Autoimmune Encephalitis, UMR MELIS Inserm 1314/CNRS 5284, France.
- 5Chief Executive, Encephalitis International, Malton, United Kingdom; and.
- 6Department of Clinical Infection, Microbiology and Immunology, University of Liverpool, United Kingdom.
Abstract
Background and objectives
N-methyl-d-aspartate receptor (NMDAR) encephalitis is a rare autoimmune disorder with severe neuropsychiatric symptoms. Although neurologic recovery is often favorable, emerging evidence shows high prevalence of long-term sequelae affecting quality of life. Most studies rely on standardized assessments, leaving patient-reported experiences underexplored. We examined long-term psychosocial outcomes using a mixed-methods approach integrating patient-reported outcome measures (PROMs), neuropsychological testing, and semistructured interviews informed by qualitative findings from SAPIENCE Level 1.Methods
Sixty-five patients with NMDAR encephalitis were recruited across 3 centers (Berlin, Barcelona, and Lyon) at a median of 7.3 years postonset. Remote assessment included semistructured interviews, validated PROMs (sleep quality, fatigue, depression, anxiety, and quality of life), and neuropsychological testing. Multiple regression models were used to identify factors associated with health-related quality of life (HRQoL).Results
Although 76.9% of patients returned to predisease occupations, substantial long-term burden persisted. Memory deficits dominated the postacute phase (68.8%) and remained most commonly reported at follow-up (29.7%). High rates of fatigue (54.4%), sleep disturbances (49.2%), and anxiety (77%) were observed with strong intercorrelations among symptom domains. Sleep disturbances showed the strongest association with reduced quality of life. Initial misdiagnosis occurred in two-thirds of patients. Despite generally positive health care experiences, 54% reported negative social relationship impacts and 46.2% found return to normalcy challenging.Discussion
NMDAR encephalitis is associated with persistent multidimensional burden despite favorable global recovery. Sleep disturbance emerges as a central and potentially modifiable determinant of HRQoL, while persistent cognitive and psychosocial challenges underscore the need for integrated long-term care. These findings also highlight the importance of patient-reported and qualitative assessments.
Related
- Predictive value of persistent cerebrospinal fluid antibodies at 12 months for long-term clinical outcomes in pediatric anti-NMDAR encephalitis: a retrospective cohort study
- Longitudinal association between a combination of four persistent patient-reported cardiopulmonary and circulatory symptoms and incident ADL/IADL difficulties
- Negotiating Mortality: A Qualitative Systematic Review and Thematic Synthesis of the Psychosocial Experiences of Pancreatic Cancer Across the Illness Trajectory.
- Repositioning community-based mental health care for people with psychosocial disabilities: a physical health equity–oriented whole-health recovery framework
- Beyond Malodor: A Multinational Patient-Reported Study of the Diagnostic, Psychosocial, and Cognitive Burden of Trimethylaminuria
BibTeX
@article{boeken2026patientreported,
title = {{Patient-Reported Experiences of Long-Term Recovery and Persistent Psychosocial Burden in NMDAR Encephalitis.}},
author = {Ole Jonas Boeken and Víctor Patricio and Marta Duda-Sikula and Chloé Buttard and Marie Benaiteau and Lena Erazo and Ava Easton and Claudia Papi and Chiara Milano and Donata Kurpas and Jerome Honnorat and Josep O Dalmau and Carsten Finke},
journal = {Neurology(R) neuroimmunology \& neuroinflammation},
year = {2026},
month = nov,
doi = {10.1212/nxi.0000000000200672},
url = {https://europepmc.org/article/MED/42970741},
note = {CC BY-NC-ND},
}
RIS
TY - JOUR
TI - Patient-Reported Experiences of Long-Term Recovery and Persistent Psychosocial Burden in NMDAR Encephalitis.
AU - Ole Jonas Boeken
AU - Víctor Patricio
AU - Marta Duda-Sikula
AU - Chloé Buttard
AU - Marie Benaiteau
AU - Lena Erazo
AU - Ava Easton
AU - Claudia Papi
AU - Chiara Milano
AU - Donata Kurpas
AU - Jerome Honnorat
AU - Josep O Dalmau
AU - Carsten Finke
PY - 2026
DA - 2026/11/02
JO - Neurology(R) neuroimmunology & neuroinflammation
DO - 10.1212/nxi.0000000000200672
UR - https://europepmc.org/article/MED/42970741
AB - Background and objectives N-methyl-d-aspartate receptor (NMDAR) encephalitis is a rare autoimmune disorder with severe neuropsychiatric symptoms. Although neurologic recovery is often favorable, emerging evidence shows high prevalence of long-term sequelae affecting quality of life. Most studies rely on standardized assessments, leaving patient-reported experiences underexplored. We examined long-term psychosocial outcomes using a mixed-methods approach integrating patient-reported outcome measures (PROMs), neuropsychological testing, and semistructured interviews informed by qualitative findings from SAPIENCE Level 1.Methods Sixty-five patients with NMDAR encephalitis were recruited across 3 centers (Berlin, Barcelona, and Lyon) at a median of 7.3 years postonset. Remote assessment included semistructured interviews, validated PROMs (sleep quality, fatigue, depression, anxiety, and quality of life), and neuropsychological testing. Multiple regression models were used to identify factors associated with health-related quality of life (HRQoL).Results Although 76.9% of patients returned to predisease occupations, substantial long-term burden persisted. Memory deficits dominated the postacute phase (68.8%) and remained most commonly reported at follow-up (29.7%). High rates of fatigue (54.4%), sleep disturbances (49.2%), and anxiety (77%) were observed with strong intercorrelations among symptom domains. Sleep disturbances showed the strongest association with reduced quality of life. Initial misdiagnosis occurred in two-thirds of patients. Despite generally positive health care experiences, 54% reported negative social relationship impacts and 46.2% found return to normalcy challenging.Discussion NMDAR encephalitis is associated with persistent multidimensional burden despite favorable global recovery. Sleep disturbance emerges as a central and potentially modifiable determinant of HRQoL, while persistent cognitive and psychosocial challenges underscore the need for integrated long-term care. These findings also highlight the importance of patient-reported and qualitative assessments.
SN - 2332-7812
ER -