Citations 4
Clinical and Biological Predictors of Quality of Life in CASPR2-antibody Encephalitis (P8-1.002)
Ceronie, Bryan , Ayoub, Ikram , Strippel, Christine , Michael, Sophia , Uy, Chris, Dawes, John, Bennett, David, Binks, Sophie, Handel, Adam, Irani, Sarosh, Dawes, John M. , Binks, Sophie , Handel, Adam E.
Neurology | June 10, 2026 | Volume: 106 | Issue: 11_Supplement_1 | Pages: No page available
Capturing What Matters: Patient Reported LGI1-ANTibody Encephalitis Outcome RatiNg Scale (LANTERN) (P9-8.006)
Ceronie, Bryan , Strippel, Christine , Soltys, John , Kelly, Mark , Wagner, Barbara J. , Lin, Ann , Handel, Adam E. , Binks, Sophie , Irani, Sarosh R. , Powell, Philip A.
Neurology | April 7, 2025 | Volume: 104 | Issue: 7_Supplement_1 | Pages: No page available
Capturing what matters: Patient‐reported LGI1‐ANTibody encephalitis outcome RatiNg scale (LANTERN)
Kelly, Mark , Ceronie, Bryan , Strippel, Christine , Lin, A. M. T., Soltys, John , Powell, Philip A. , Irani, Sarosh R. , Ceronie, Bryan , Irani, Sarosh R , Kelly, Mark , Wagner, Barbara, Lin, Ann Yee, Handel, Adam E. , Binks, Sophie
Annals of Clinical and Translational Neurology | February 26, 2025 | Volume: 12 | Issue: 4 | Pages: 821-831
AbstractBackgroundLGI1‐antibody encephalitis (LGI1‐Ab‐E) is a common form of autoimmune encephalitis where most patients demonstrate ‘good’ clinician‐rated outcomes. However, more targeted questionnaires reveal numerous debilitating symptoms for many years. To better quantify these persistent features, we designed the LGI1‐Antibody Encephalitis Rating (LANTERN) scale, a quantified, disease‐specific patient‐reported outcome measure (PROM), adhering to FDA guidelines.MethodsA participant‐driven mixed‐methods approach 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) Psychometric survey to condense the most sensitive and valid questions. Analyses incorporated sensitivity testing with multiple internal and external validations.ResultsFrom 73 items across six domains (Stage 1; n = 18), a questionnaire assessing the frequency and severity of 43 symptoms (80 questions), plus nine activities of daily living (ADL), was developed through cognitive debriefing (Stage 2; n = 15). This 89‐question survey was completed (Stage 3; 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 intraclass re‐testing correlations (0.81–0.98; n = 19) and strong associations with numerous predefined external measures.DiscussionLANTERN represents a PROM for LGI1‐Ab‐E, with initial content, structural and construct validity and test–retest reliability. It can be used as a reliable, tailored, efficient and sensitive method to establish symptom burden in people with LGI1‐Ab‐E, both in clinical practice and trials.
Immunotherapy‐Resistant Neuropathic Pain and Fatigue Predict Quality‐of‐Life in Contactin‐Associated Protein‐Like 2 Antibody Disease
Ceronie, Bryan , Strippel, Christine , Uy, Christopher , Paneva, Sofija , Makuch, Mateusz , Soleimani, Babak , Turaga, Sanchit, Ramanathan, Sudarshini , Michael, Sophia , Varley, James , Easton, Ava , Bennett, David , Irani, Anushka , Irani, Sarosh R. , Ramanathan, Sudarshini , Themistocleous, Andreas , Bennett, David L , Irani, Anushka , Irani, Sarosh R , Paneva, Sofija , Binks, Sophie , Dawes, John M. , Handel, Adam E.
Annals of Neurology | January 18, 2025 | Volume: 97 | Issue: 3 | Pages: 521-528
The long‐term clinical outcomes and associated prognostic factors in contactin‐associated protein‐like 2 (CASPR2)‐antibody diseases are unknown. A total of 75 participants with CASPR2 antibodies were longitudinally assessed for disability, quality‐of‐life, and chronic pain. Although most symptoms improved within 6 months of treatment, neuropathic pain and fatigue were the most immunotherapy refractory, and persisted for up to 6 years. Furthermore, these two factors—but not CASPR2 antibody levels or subclasses—independently predicted worse disability and quality‐of‐life at 24 months. Quality‐of‐life varied widely for any given modified Rankin Scale score, indicating a divergence between patient and clinician assessed outcomes. Further work should study the relative importance of these measures, and the immunopathogenesis underlying intractable symptoms. ANN NEUROL 2025;97:521–528