From checkboxes to emojis: a novel approach to patient-reported outcomes in multiple sclerosis

从复选框到表情符号:多发性硬化症患者报告结果的新方法

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Abstract

BACKGROUND: Patient-reported outcome measures (PROMs) improve multiple sclerosis (MS) management by reflecting patients' perspectives of their disease. Mayo Clinic Electronic Emoji Based Neurological Impairment Status (MEBNIS) is a short PROM consisting of four equally-weighted domains (Memory(MEBNIS), Mood(MEBNIS), Fatigue-Sleepiness(MEBNIS), and Ambulation(MEBNIS)) and Composite(MEBNIS), which are based on emojis. OBJECTIVE: To investigate the correlations of MEBNIS with patient-reported, examination-based, performance-based, and radiological metrics of disease severity in persons with MS (pwMS). METHODS: PwMS (n = 195) prospectively completed MEBNIS, Expanded Disability Status Scale (EDSS), MS Functional Composite (MSFC) and its subtests [25-Foot Walk Test (25FWT), 9-Hole Peg Test (9HPT), Paced Auditory Serial Addition Test (PASAT)], Beck Depression Inventory (BDI), Fatigue Questionnaire (FQ), and Epworth Sleepiness Scale (ESS) between May 2021 and May 2024. Participants also underwent brain MRIs. Correlations were summarized using Spearman's rank correlation coefficients. RESULTS: Memory(MEBNIS) correlated (p≤0.001) with PASAT (rho = -0.25), ESS (rho = 0.24), FQ (rho = 0.36), and BDI (rho = 0.36). Mood(MEBNIS) correlated (p<0.001) with FQ (rho = 0.40) and BDI (rho = 0.46). Fatigue-Sleepiness(MEBNIS) correlated (p<0.001) with ESS (rho = 0.49), FQ (rho = 0.59), and BDI (rho = 0.44). Ambulation(MEBNIS) correlated (p<0.001) with EDSS (rho = 0.69), MSFC z-score (rho = -0.59), 25FWT (rho = 0.66), 9HPT (rho = 0.54), PASAT (rho = -0.32), FQ (rho = 0.41), and BDI (rho = 0.37). Composite(MEBNIS) correlated (p<0.001) with EDSS (rho = 0.47), MSFC z-score (rho = -0.42), 25FWT (rho = 0.49), 9HPT (rho = 0.36), PASAT (rho = -0.26), ESS (rho = 0.38), FQ (rho = 0.64), and BDI (rho = 0.58). Memory(MEBNIS), Ambulation(MEBNIS) and Composite(MEBNIS) correlated with cortical gray matter (Memory(MEBNIS) rho = -0.17; Ambulation(MEBNIS) rho = -0.30; Composite(MEBNIS) rho = -0.20) and thalamus (Memory(MEBNIS) rho = -0.17; Ambulation(MEBNIS) rho = -0.20; Composite(MEBNIS) rho = -0.17) volumes (p<0.05). CONCLUSIONS: As a novel visual PROM, MEBNIS correlates with established patient-reported, examination-based, performance-based, and radiological metrics of MS severity. It offers a fast, intuitive, and accessible multi-domain evaluation of impairment and disease severity in MS, applicable to both clinical practice and clinical trials as a potential digital tool.

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