Long-Term Cognitive, Functional, and Patient-Reported Outcomes in Patients With Anti-NMDAR Encephalitis
Juliette Brenner1, Cinthia J Ruhe1, Ilse Kulderij1
1From the Department of Neurology (J.B., C.J.R., I.K., A.E.M.B., Y.S.C., C.N.K., J.C.P.V., A.A.G.T., B.T., L.P.K., M.A.A.M.d.B., M.R.M., J.K., R.W.v.S., J.M.d.V., R.F.N., P.A.E.S.S., M.J.T.), Erasmus University Medical Center, Rotterdam; Department of Neurology (S.H.C.O.), Amsterdam University Medical Center; Department of Immunology (S.V.), Erasmus University Medical Center, Rotterdam; Laboratory of Medical Microbiology and Immunology Microvida (M.W.J.S.), Tilburg; and Department of Neurology & Alzheimer Center (E.v.d.B.), Erasmus University Medical Center, Rotterdam, the Netherlands.
Recovery from anti-NMDA receptor (anti-NMDAR) encephalitis can take up to 3 years, with many patients experiencing lasting cognitive and psychosocial issues. The modified Rankin Scale (mRS) may not fully reflect these long-term challenges in patients with anti-NMDAR encephalitis.
Area of Science:
- Neuroimmunology
- Neuropsychology
- Clinical Neurology
Background:
- Anti-NMDA receptor (anti-NMDAR) encephalitis is a severe autoimmune condition often affecting young adults.
- While many patients regain independence, persistent cognitive and psychosocial deficits are common, impacting long-term quality of life.
- The temporal trajectory of cognitive recovery and factors influencing outcomes remain incompletely understood.
Purpose of the Study:
- To delineate the cognitive recovery trajectory in anti-NMDAR encephalitis patients over time.
- To assess self-reported outcomes, including emotional well-being, social functioning, and quality of life.
- To identify factors associated with patient outcomes and explore the relationship between cognitive function and self-reported well-being.
Main Methods:
- A large-scale, cross-sectional and prospective cohort study involving 92 patients diagnosed with anti-NMDAR encephalitis.
- Neuropsychological assessments evaluated memory, language, perception, construction, attention, and executive functions.
- Patient-reported outcome measures (PROMs) and functional outcomes (e.g., modified Rankin Scale [mRS]) were collected and analyzed.
Main Results:
- Cognitive scores improved up to 36 months post-diagnosis, with most gains in the first 6 months; however, 34% had persistent impairment beyond 36 months.
- Memory and language domains showed the most significant persistent deficits, alongside self-reported issues in emotional well-being, social functioning, energy, and quality of life.
- Thirty percent of patients did not resume work or school, associated with processing speed deficits and lower well-being scores.
Conclusions:
- Recovery from anti-NMDAR encephalitis is prolonged, potentially lasting 3 years, with a significant risk of persistent cognitive deficits (memory, language) and psychosocial sequelae.
- The modified Rankin Scale (mRS) is insufficient for fully capturing the spectrum of patient outcomes.
- Impaired return to work/education is common and linked to cognitive deficits and reduced well-being, highlighting the need for comprehensive rehabilitation strategies.
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