Abstract Details

Title Capturing What Matters: Patient Reported LGI1-ANTibody Encephalitis Outcome RatiNg Scale (LANTERN)

Topic Autoimmune Neurology

Presentation(s) P9 - Poster Session 9 (11:45 AM-12:45 PM)

Poster/Presentation
Number 8-006

Objective

To develop a disease-specific, patient-reported outcome measure (PROM) for LGI1-antibody-encephalitis (LGI1-Ab-E), to be used in clinical and research practice.

Background LGI1-Ab-E is a common form of autoimmune encephalitis where most patients demonstrate ‘good’ clinician-rated outcomes. However, more targeted questionnaires reveal numerous experience-debilitating symptoms for many years. To better quantify these persistent features, we designed LGI1-ANTibody-Encephalitis RatiNg (LANTERN), a quantified, disease-specific PROM.

Design/Methods A participant-driven mixed-methods approach, advocated by FDA guidelines, to develop a clinically valid questionnaire over three stages: (1) Item generation through semi-structured interviews; (2) Repeated cognitive debriefing rounds to advance comprehensibility, relevance, and comprehensiveness (3) A psychometric survey to condense the most sensitive and valid questions. Analyses incorporated sensitivity-testing and multiple internal and external validations.

Results From 73 items across six domains (Stage 1; n=18), a questionnaire assessing frequency and severity of 43 symptoms (80 questions), plus nine activities of daily living (ADL), was developed through cognitive debriefing (Stage 2, n=15). In Stage 3, this 89-question survey was completed (n=66 patients and 32 relatives) and distilled, using exploratory factor analyses, to a three-factor symptom-burden questionnaire comprising 41 questions (19 symptoms and 6 ADL), separated into physical, cognitive/behavioural and ADL domains. These factors demonstrated strong internal reliability (Cronbach alpha: 0.85-0.91), correlations with relative-completed questionnaires (R=0.73-0.85;P<0.001), good-to-excellent intra-class re-testing correlations (0.81-0.98; N=19) and strong associations with numerous predefined external measures.

Conclusions LANTERN represents a PROM for LGI1-Ab-E, with initial content, structural and construct validity, and test-retest reliability. It can be used as a tailored and sensitive method to estimate symptom burden over time in people with LGI1-Ab-E, both in clinical practice and trials.

Authors/Disclosures
Mark J. Kelly, MBBS (Royal College of Surgeons in Ireland) PRESENTER	The institution of Dr. Kelly has received research support from The Health Research Board / Wellcome Trust.
B D. Wagner, Jr., MD	Dr. Wagner has nothing to disclose.
Bryan Ceronie, MBBS	Dr. Ceronie has nothing to disclose.
Christine Strippel, MD	Dr. Strippel has nothing to disclose.
Ann Lin, MD (UC Health Neurology)	No disclosure on file
Adam Handel (University of Oxford)	The institution of Adam Handel has received research support from Medical Research Council (UK). The institution of Adam Handel has received research support from UCB-Pharma. The institution of Adam Handel has received research support from MyAware.
John N. Soltys, MD (Mayo Clinic)	Dr. Soltys has nothing to disclose.
Sophie Binks, MD, MBBS, PhD	The institution of Dr. Binks has received research support from Wellcome Trust. The institution of Dr. Binks has received research support from PetSavers. The institution of Dr. Binks has received research support from PetPlan. The institution of Dr. Binks has received research support from NIHR. The institution of Dr. Binks has received research support from Morris Animal Foundation. Dr. Binks has received personal compensation in the range of $0-$499 for serving as a Speaker with ECTRIMS. Dr. Binks has received personal compensation in the range of $0-$499 for serving as a Speaker with Vetmeduni Wien. Dr. Binks has received personal compensation in the range of $0-$499 for serving as a Speaker with ANA. Dr. Binks has a non-compensated relationship as a Speaker with Encephalitis Society UK that is relevant to AAN interests or activities. Dr. Binks has a non-compensated relationship as a Scientific Panel Member with Encephalitis International that is relevant to AAN interests or activities. Dr. Binks has a non-compensated relationship as a Editorial Fellow with JAMA Neurology that is relevant to AAN interests or activities.
Sarosh R. Irani, MD, PhD, FRCP, FEAN (Mayo Clinic)	Dr. Irani has received personal compensation in the range of $50,000-$99,999 for serving as a Consultant for AZ, Roche, Cerebral therapeutics, Biogen, Amgen, Argenex, Clarivate, IQVIA, BioHaven therapeutics.. Dr. Irani has received personal compensation in the range of $500-$4,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Brain. Dr. Irani has received intellectual property interests from a discovery or technology relating to health care. Dr. Irani has received intellectual property interests from a discovery or technology relating to health care.
P Powell, PhD	Dr. Powell has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for IQVIA. Dr. Powell has received personal compensation in the range of $0-$499 for serving as a Consultant for Eli Lilly. Dr. Powell has received personal compensation in the range of $500-$4,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Quality of Life Research. The institution of Dr. Powell has received research support from FSHD Society. The institution of Dr. Powell has received research support from EuroQol Research Foundation. The institution of Dr. Powell has received research support from AstraZeneca. The institution of Dr. Powell has received research support from KMC Healthcare. The institution of Dr. Powell has received research support from Duchenne UK. The institution of Dr. Powell has received research support from Sanofi.

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