SynthesisNeurology(R) neuroimmunology & neuroinflammation2024
Clinical Outcome Assessments in Encephalitis: A Systematic Review
Synthesis in Neurology(R) neuroimmunology & neuroinflammation, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers, 1 of them a synthesis that pooled it.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
11 citing papers in PubMed, 1 synthesis or guideline pooled it, 13 citations in OpenAlex.
- Systematic literature review of the humanistic and economic burden of focal epilepsy and primary generalized tonic-clonic seizures in adults.Epilepsia open · 2024Pooled it
- A new Patient-Reported Outcome Scale to assess autoimmune Encephalitis: PROSE.Annals of neurology · 2026Article
- Development and validation of the NEOS2 score for prediction of long-term outcomes and improvement after first-line immunotherapy in patients with anti-NMDAR encephalitis: an international cohort study.The Lancet regional health. Europe · 2026Article
- The relationship between patient-reported quality of life and clinician-rated outcome scores in patients with autoimmune encephalitis: a study of the Australian Autoimmune Encephalitis Consortium.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Article
- Patient-Reported Outcome Measures in NMDA Receptor Encephalitis.Neurology(R) neuroimmunology & neuroinflammation · 2025Observational
- Long-Term Cognitive, Functional, and Patient-Reported Outcomes in Patients With Anti-NMDAR Encephalitis.Neurology · 2024Article
- Autoimmune and infectious encephalitis: development of a discriminative tool for early diagnosis and initiation of therapy.Journal of neurology · 2024Article
- Recent advances in autoimmune encephalitis.Arquivos de neuro-psiquiatria · 2024Review
- Assessment of long-term psychosocial outcomes in N-methyl-D-aspartate receptor encephalitis - the SAPIENCE study protocol.BMC neurology · 2024Observational
- The Patient Perspective in Encephalitis Research.Neurology(R) neuroimmunology & neuroinflammation · 2024Article
- Innovation and optimization in autoimmune encephalitis trials: the design and rationale for the Phase 3, randomized study of satralizumab in patients with NMDAR-IgG-antibody-positive or LGI1-IgG-antibody-positive autoimmune encephalitis (CIELO).Frontiers in neurology · 2024Article
Corrections and comments
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Authors and funding
6 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
BACKGROUND AND
objectivesMost patients with encephalitis experience persisting neurocognitive and neuropsychiatric sequelae in the years following this acute illness. Reported outcomes are often based on generic clinical outcome assessments that rarely capture the patient perspective. This may result in an underestimation of disease-specific sequelae. Disease-specific clinical outcome assessments can improve clinical relevance of reported outcomes and increase the power of research and trials. There are no patient-reported outcome measures (PROMs) developed or validated specifically for patients with encephalitis. The primary objective of this systematic literature review was to identify PROMs that have been developed for or validated in patients with encephalitis.
methodsWe performed a systematic review of the literature published from inception until May 2023 in 3 large international databases (MEDLINE, EMBASE and Cochrane libraries). Eligible studies should have developed or validated a PROM in patients with encephalitis or encephalopathy. Methodologic quality was evaluated using the Consensus-based Standards for the selection of health status Measurement Instruments study design checklist for PROMs.
resultsWe identified no disease-specific PROMs developed or validated for patients with encephalitis. We identified one study on the development and validation of a disease-specific PROM for hepatic encephalopathy, although this disease course is substantially different to that of patients with encephalitis. The methodologic quality of the included study was generally rated as "doubtful." We identified 30 PROMs that have been DISCUSSION: This systematic review confirms a critical gap in clinical outcome assessments in patients with encephalitis, failing to identify a validated measuring tool for detecting neurocognitive, functional, and health status. It is therefore essential to develop and/or validate disease-specific PROMs for the population with encephalitis to capture relevant information for patient management and clinical trials about the effects of disease that are at risk of being overlooked.
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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.