OBJECTIVE: To create a reference table of disability outcomes in multiple sclerosis (MS) that would enable patients to rank their disability relative to others' with similar disease duration and to develop a cost-effective research tool for comparing MS severity across patient populations and time periods. METHODS: The North American Research Committee on Multiple Sclerosis (NARCOMS) Registry collects disability data from patients with MS on a validated, 9-point Patient-Determined Disease Steps (PDDS) scale. We compiled the Disability Expectancy Table, which displays cumulative frequencies of PDDS scores for each year of disease duration, from 0 to 45 years. We also tabulated disease duration-adjusted mean ranks of PDDS scores, referred to as Patient-derived MS Severity Scores (P-MSSS). RESULTS: The cohort consisted of 27,918 NARCOMS enrollees, 72.7% of whom were female and 90.1% of whom were white. Mean age at symptom onset was 30.1 ± 10.1 years, and age at enrollment was 47.1 ± 11.0 years. The Disability Expectancy Table and P-MSSS afford a detailed overview of disability outcomes in a large MS cohort over a 45-year period. In the first year of disease, 15% of patients reported need of ambulatory aid, and 4% needed bilateral assistance or worse; after 45 years of disease, 76% of patients required ambulatory aid, and 52% bilateral assistance or worse. Proportion of patients who reported minimal or no interference in daily activities (PDDS ≤ 1) declined from 63% in the first year to 8% after 45 years of disease. CONCLUSION: The Disability Expectancy Table allows individual patients to determine how their disability ranks relative to NARCOMS enrollees with the same disease duration. P-MSSS may be used to compare disability across patient populations and to track disease progression in patient cohorts. P-MSSS does not require a formal neurologic examination and may therefore find wide applicability as a practical and cost-effective outcome measure in epidemiologic studies.
OBJECTIVE: To create a reference table of disability outcomes in multiple sclerosis (MS) that would enable patients to rank their disability relative to others' with similar disease duration and to develop a cost-effective research tool for comparing MS severity across patient populations and time periods. METHODS: The North American Research Committee on Multiple Sclerosis (NARCOMS) Registry collects disability data from patients with MS on a validated, 9-point Patient-Determined Disease Steps (PDDS) scale. We compiled the Disability Expectancy Table, which displays cumulative frequencies of PDDS scores for each year of disease duration, from 0 to 45 years. We also tabulated disease duration-adjusted mean ranks of PDDS scores, referred to as Patient-derived MS Severity Scores (P-MSSS). RESULTS: The cohort consisted of 27,918 NARCOMS enrollees, 72.7% of whom were female and 90.1% of whom were white. Mean age at symptom onset was 30.1 ± 10.1 years, and age at enrollment was 47.1 ± 11.0 years. The Disability Expectancy Table and P-MSSS afford a detailed overview of disability outcomes in a large MS cohort over a 45-year period. In the first year of disease, 15% of patients reported need of ambulatory aid, and 4% needed bilateral assistance or worse; after 45 years of disease, 76% of patients required ambulatory aid, and 52% bilateral assistance or worse. Proportion of patients who reported minimal or no interference in daily activities (PDDS ≤ 1) declined from 63% in the first year to 8% after 45 years of disease. CONCLUSION: The Disability Expectancy Table allows individual patients to determine how their disability ranks relative to NARCOMS enrollees with the same disease duration. P-MSSS may be used to compare disability across patient populations and to track disease progression in patient cohorts. P-MSSS does not require a formal neurologic examination and may therefore find wide applicability as a practical and cost-effective outcome measure in epidemiologic studies.
Authors: I Kister; E Chamot; J H Bacon; P M Niewczyk; R A De Guzman; B Apatoff; P Coyle; A D Goodman; M Gottesman; C Granger; B Jubelt; L Krupp; M Lenihan; F Lublin; C Mihai; A Miller; F E Munschauer; A B Perel; B E Teter; B Weinstock-Guttman; R Zivadinov; J Herbert Journal: Neurology Date: 2010-07-20 Impact factor: 9.910
Authors: R H S R Roxburgh; S R Seaman; T Masterman; A E Hensiek; S J Sawcer; S Vukusic; I Achiti; C Confavreux; M Coustans; E le Page; G Edan; G V McDonnell; S Hawkins; M Trojano; M Liguori; E Cocco; M G Marrosu; F Tesser; M A Leone; A Weber; F Zipp; B Miterski; J T Epplen; A Oturai; P Soelberg Sørensen; E G Celius; N Téllez Lara; X Montalban; P Villoslada; A M Silva; M Marta; I Leite; B Dubois; J Rubio; H Butzkueven; T Kilpatrick; M P Mycko; K W Selmaj; M E Rio; M Sá; G Salemi; G Savettieri; J Hillert; D A S Compston Journal: Neurology Date: 2005-04-12 Impact factor: 9.910
Authors: G V González-Enríquez; B M Torres-Mendoza; J Márquez-Pedroza; M A Macías-Islas; G G Ortiz; J A Cruz-Ramos Journal: Immunogenetics Date: 2018-02-03 Impact factor: 2.846
Authors: Jonathan D Santoro; Michael Waltz; Greg Aaen; Anita Belman; Leslie Benson; Mark Gorman; Manu S Goyal; Jennifer S Graves; Yolanda Harris; Lauren Krupp; Timothy Lotze; Soe Mar; Manikum Moodley; Jayne Ness; Mary Rensel; Moses Rodriguez; Teri Schreiner; Jan-Mendelt Tillema; Emmanuelle Waubant; Bianca Weinstock-Guttman; Brigitte F Hurtubise; Shelly Roalstad; John Rose; T Charles Casper; Tanuja Chitnis Journal: Neurology Date: 2020-07-20 Impact factor: 9.910