BACKGROUND: In persons with multiple sclerosis (MS), the Expanded Disability Status Scale (EDSS) is the criterion standard for assessing disability, but its in-person nature constrains patient participation in research and clinical assessments. OBJECTIVE: The aim of this study was to develop and validate a scalable, electronic, unsupervised patient-reported EDSS (ePR-EDSS) that would capture MS-related disability across the spectrum of severity. METHODS: We enrolled 136 adult MS patients, split into a preliminary testing Cohort 1 (n = 50), and a validation Cohort 2 (n = 86), which was evenly distributed across EDSS groups. Each patient completed an ePR-EDSS either immediately before or after a MS clinician's Neurostatus EDSS evaluation. RESULTS: In Cohort 2, mean age was 50.6 years (range = 26-80) and median EDSS was 3.5 (interquartile range (IQR) = [1.5, 5.5]). The ePR-EDSS and EDSS agreed within 1-point for 86% of examinations; kappa for agreement within 1-point was 0.85 (p < 0.001). The correlation coefficient between the two measures was 0.91 (<0.001). DISCUSSION: The ePR-EDSS was highly correlated with EDSS, with good agreement even at lower EDSS levels. For clinical care, the ePR-EDSS could enable the longitudinal monitoring of a patient's disability. For research, it provides a valid and rapid measure across the entire spectrum of disability and permits broader participation with fewer in-person assessments.
BACKGROUND: In persons with multiple sclerosis (MS), the Expanded Disability Status Scale (EDSS) is the criterion standard for assessing disability, but its in-person nature constrains patient participation in research and clinical assessments. OBJECTIVE: The aim of this study was to develop and validate a scalable, electronic, unsupervised patient-reported EDSS (ePR-EDSS) that would capture MS-related disability across the spectrum of severity. METHODS: We enrolled 136 adult MS patients, split into a preliminary testing Cohort 1 (n = 50), and a validation Cohort 2 (n = 86), which was evenly distributed across EDSS groups. Each patient completed an ePR-EDSS either immediately before or after a MS clinician's Neurostatus EDSS evaluation. RESULTS: In Cohort 2, mean age was 50.6 years (range = 26-80) and median EDSS was 3.5 (interquartile range (IQR) = [1.5, 5.5]). The ePR-EDSS and EDSS agreed within 1-point for 86% of examinations; kappa for agreement within 1-point was 0.85 (p < 0.001). The correlation coefficient between the two measures was 0.91 (<0.001). DISCUSSION: The ePR-EDSS was highly correlated with EDSS, with good agreement even at lower EDSS levels. For clinical care, the ePR-EDSS could enable the longitudinal monitoring of a patient's disability. For research, it provides a valid and rapid measure across the entire spectrum of disability and permits broader participation with fewer in-person assessments.
Authors: Alan J Thompson; Brenda L Banwell; Frederik Barkhof; William M Carroll; Timothy Coetzee; Giancarlo Comi; Jorge Correale; Franz Fazekas; Massimo Filippi; Mark S Freedman; Kazuo Fujihara; Steven L Galetta; Hans Peter Hartung; Ludwig Kappos; Fred D Lublin; Ruth Ann Marrie; Aaron E Miller; David H Miller; Xavier Montalban; Ellen M Mowry; Per Soelberg Sorensen; Mar Tintoré; Anthony L Traboulsee; Maria Trojano; Bernard M J Uitdehaag; Sandra Vukusic; Emmanuelle Waubant; Brian G Weinshenker; Stephen C Reingold; Jeffrey A Cohen Journal: Lancet Neurol Date: 2017-12-21 Impact factor: 44.182
Authors: J Lechner-Scott; L Kappos; M Hofman; C H Polman; H Ronner; X Montalban; M Tintore; M Frontoni; C Buttinelli; M P Amato; M L Bartolozzi; M Versavel; F Dahlke; J-F Kapp; R Gibberd Journal: Mult Scler Date: 2003-03 Impact factor: 6.312
Authors: D S Goodin; A T Reder; G C Ebers; G Cutter; M Kremenchutzky; J Oger; D Langdon; M Rametta; K Beckmann; T M DeSimone; V Knappertz Journal: Neurology Date: 2012-04-11 Impact factor: 9.910
Authors: Riley Bove; Carolyn Bevan; Elizabeth Crabtree; Chao Zhao; Refujia Gomez; Priya Garcha; John Morrissey; Jason Dierkhising; Ari J Green; Stephen L Hauser; Bruce Ac Cree; Mitchell T Wallin; Jeffrey M Gelfand Journal: Mult Scler Date: 2018-08-24 Impact factor: 6.312
Authors: Marco Kaufmann; Anke Salmen; Laura Barin; Milo Alan Puhan; Pasquale Calabrese; Christian Philipp Kamm; Claudio Gobbi; Jens Kuhle; Zina-Mary Manjaly; Vladeta Ajdacic-Gross; Sandra Schafroth; Britta Bottignole; Sabin Ammann; Chiara Zecca; Marcus D'Souza; Viktor von Wyl Journal: Mult Scler Relat Disord Date: 2020-04-28 Impact factor: 4.339
Authors: Erica Schleimer; Jennifer Pearce; Andrew Barnecut; William Rowles; Antoine Lizee; Arno Klein; Valerie J Block; Adam Santaniello; Adam Renschen; Refujia Gomez; Anisha Keshavan; Jeffrey M Gelfand; Roland G Henry; Stephen L Hauser; Riley Bove Journal: J Med Internet Res Date: 2020-07-06 Impact factor: 5.428
Authors: Valerie J Block; Riley Bove; Chao Zhao; Priya Garcha; Jennifer Graves; Andrew R Romeo; Ari J Green; Diane D Allen; Jill A Hollenbach; Jeffrey E Olgin; Gregory M Marcus; Mark J Pletcher; Bruce A C Cree; Jeffrey M Gelfand Journal: JAMA Netw Open Date: 2019-03-01
Authors: Wan-Yu Hsu; Annika Anderson; William Rowles; Katherine E Peters; Vicki Li; Katie L Stone; Liza H Ashbrook; Amy A Gelfand; Riley M Bove Journal: Mult Scler J Exp Transl Clin Date: 2021-11-05