Evidence map›Paper›PMID 39242986›Full record

Observational studyBMC neurology2024

Assessment of long-term psychosocial outcomes in N-methyl-D-aspartate receptor encephalitis - the SAPIENCE study protocol.

Ole Jonas Boeken, Josephine Heine, Marta Duda-Sikula, Víctor Patricio, Géraldine Picard, Chloé Buttard, Marie Benaiteau, Álvaro Mendes, Fuchsia Howard, Ava Easton and 4 more

Registry-linked trialAbstract readMulticenter StudyObservational Study
PubMed Full text at PMC Publisher
In one paragraph

Observational study in BMC neurology, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT06609044 (Social and Psychological Long-term Impact of NMDA Receptor Encephalitis), which is not on this map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

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.

NCT06609044 completednot on this map

Social and Psychological Long-term Impact of NMDA Receptor Encephalitis

TypeobservationalSponsorHospices Civils de LyonRan2024 to 2025Enrolled20ConditionsAutoimmune Encephalitis
3 · Its place in the literature

Who cites it

3 citing papers in PubMed.

  1. Review
  2. Review
  3. Patient-Reported Outcome Measures in NMDA Receptor Encephalitis.Neurology(R) neuroimmunology & neuroinflammation · 2025
    Observational
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

14 authors.

Ole Jonas BoekenDepartment of Neurology, Charité - Universitätsmedizin Berlin, Charité Campus Mitte, Charitéplatz 1, 10177, Berlin, Berlin, Germany.
Josephine HeineDepartment of Neurology, Charité - Universitätsmedizin Berlin, Charité Campus Mitte, Charitéplatz 1, 10177, Berlin, Berlin, Germany.
Marta Duda-SikulaDepartment of Family and Pediatric Nursing, Faculty of Health Sciences, WrocławDepartment of Family Medicine, Wroclaw Medical University, Bartla 5 St., wyb. Ludwika, Pasteura1, Wroclaw, 51-618, 50-367, Poland.
Víctor PatricioFundacio de Clinic per a la Recerca Clinic Barcelona - Biomédica (FCRB) - Institut de Investigacions, Biomediques August Pi I Sunyer, c/Rosselló 149-153, Barcelona, Spain.
Géraldine PicardFrench reference center on paraneoplastic neurological diseases and autoimmune encephalitis, UMR MELIS Inserm, Université Claude Bernard Lyon1, Hôpital neurologique 59 Bd Pinel, Bron cedex, 69677, 1314 / CNRS 5284, France.
Chloé ButtardFrench reference center on paraneoplastic neurological diseases and autoimmune encephalitis, UMR MELIS Inserm, Université Claude Bernard Lyon1, Hôpital neurologique 59 Bd Pinel, Bron cedex, 69677, 1314 / CNRS 5284, France.
Marie BenaiteauFrench reference center on paraneoplastic neurological diseases and autoimmune encephalitis, UMR MELIS Inserm, Université Claude Bernard Lyon1, Hôpital neurologique 59 Bd Pinel, Bron cedex, 69677, 1314 / CNRS 5284, France.
Álvaro MendesInstituto de Investigação e Inovação em Saúde, Universidade do Porto, Portugal, Rua Alfredo Allen, 8, 4200-180, Porto, Portugal.
Fuchsia HowardFaculty of Applied Sciences, The University of British Columbia, T201 - 211, Westbrook Mall, Vancouver, Canada.
Ava EastonEncephalitis International, YO17 7DT, Malton, UK.
Donata Kurpas *Department of Family and Pediatric Nursing, Faculty of Health Sciences, WrocławDepartment of Family Medicine, Wroclaw Medical University, Bartla 5 St., wyb. Ludwika, Pasteura1, Wroclaw, 51-618, 50-367, Poland.
Jérôme Honnorat *French reference center on paraneoplastic neurological diseases and autoimmune encephalitis, UMR MELIS Inserm, Université Claude Bernard Lyon1, Hôpital neurologique 59 Bd Pinel, Bron cedex, 69677, 1314 / CNRS 5284, France.
Josep Dalmau *Fundacio de Clinic per a la Recerca Clinic Barcelona - Biomédica (FCRB) - Institut de Investigacions, Biomediques August Pi I Sunyer, c/Rosselló 149-153, Barcelona, Spain.
Carsten Finke *Department of Neurology, Charité - Universitätsmedizin Berlin, Charité Campus Mitte, Charitéplatz 1, 10177, Berlin, Berlin, Germany. carsten.finke@charite.de.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundN-methyl-D-aspartate-receptor (NMDAR) encephalitis is a rare neurological autoimmune disease with severe neuropsychiatric symptoms during the acute phase. Despite good functional neurological recovery, most patients continue to experience cognitive, psychiatric, psychological, and social impairments years after the acute phase. However, the precise nature and evolving patterns over time of these long-term consequences remain unclear, and their implications for the well-being and quality of life of predominantly young patients have yet to be thoroughly examined.

methodsSAPIENCE is a European multi-center (n = 3) prospective observational cohort study studying the long-term cognitive, psychiatric, psychological, and social outcome in patients with NMDAR encephalitis. The study consists of three interconnected levels. Level 1 comprises a qualitative interview and focus groups with patients and their caregivers. Level 2 consists of a condensed form of the interview, standardized questionnaires, and a detailed neuropsychological examination of patients. Level 3 involves an online survey that will be open to patients world-wide and explores patient-reported outcomes (PROMs), and patient-reported experiences (PREMs) in association with clinical and cognitive outcomes. Levels 1 to 3 will progressively contribute developing of structured interviews, survey questions, and treatment guidelines by informing one another. DISCUSSION: SAPIENCE is an in-depth study of the long-term effects of NMDAR encephalitis and bridges the gap between standardized assessments and individual patient experiences, intending to improve patient care and to increase awareness of the psychosocial long-term consequences of the disease. Through collaboration of experts in clinical neurology and social and health psychology across Europe, SAPIENCE aims to create online assessment tools and formulate guidelines for patient-centered post-acute care that will help enhance the quality of life for patients and caregivers.

Indexed as

Anti-N-Methyl-D-Aspartate Receptor EncephalitisAdultCohort StudiesEuropeFemaleHumansMaleNeuropsychological TestsPatient Reported Outcome MeasuresProspective StudiesQuality of LifeCognitive outcomesHealth-related quality of lifeNMDA receptor encephalitisPatient-reported experience measuresPatient-reported outcome measuresPost-acute interventionsSocial & caregiver burden

Identifiers

PMID39242986
PMCPMC11378596

What OpenQuestion holds

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Registered trials

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.