LGI1-Antibody Encephalitis Rating Scale (LANTERN)

The questionnaire contains 41 items and can be completed by patients in less than 10 minutes, either on paper or electronically. It is suitable for use during treatment and throughout recovery, typically at 3–6 month intervals or as clinically indicated.

A corresponding proxy version is also available for completion by a relative or caregiver when patients are unable to self-report or when additional corroboration is required.

LANTERN comprises two complementary components across three domains:

• Symptom Burden – assesses the frequency and impact of:
  • Physical symptoms (10 items)
  • Cognitive and behavioral symptoms on quality of life (25 items)
• Activities of Daily Living (ADL) – evaluates the impact of LGI1-antibody encephalitis on everyday functioning (6 items). 

LANTERN was developed using a rigorous, patient-centred methodology in accordance with FDA guidance for the development of patient-reported outcome measures (PROMs). Researchers at the University of Oxford and the University of Sheffield worked closely with patients, relatives and clinical experts throughout the development process to ensure the instrument captured the symptoms and functional impacts most relevant to people living with LGI1-antibody encephalitis.

Development was completed in three stages:

• Item generation - Initial semi-structured patient interviews generated 73 items across six domains.
• Cognitive refinement - Following cognitive debriefing with patients and relatives, these were refined into an 89-question questionnaire assessing 43 symptoms and 9 activities of daily living (ADL).
• Psychometric validation - The questionnaire was then evaluated in a psychometric study involving 66 patients and 32 relatives, and refined using exploratory factor analysis to produce the final 41-item instrument.

LANTERN demonstrated strong psychometric performance, including high internal consistency (Cronbach's α = 0.85–0.91), strong agreement between patient and proxy responses (r = 0.73–0.85), excellent test–retest reliability (ICC = 0.81–0.98), and good construct validity through strong correlations with established clinical and quality-of-life measures.

Every question has 5 possible responses, graded on a scale of 0-4.

The LANTERN score calculator normalises the three factor-scores (physical symptoms, cognitive/behavioural symptoms, ADL) to a 0-100 scale, where 0 is the lowest possible disease burden, and 100 is the highest. A three-factor sum score, which combines all three score with equal weighting, can also be calculated to provide an overall picture of disease burden. However, we recommend that each factor is interpreted separately in practice.

Note that patients are asked to rate their symptoms regardless of contribution by other comorbidities or medication adverse-effects. Clinicians should take co-existing illnesses into account when interpreting the LANTERN score. 

Pen and Paper

eCOA – Electronic administration (REDCap)