Abstract: Comparing Disability of MS Cohort in a Tertiary Clinic and Volunteer North American Research Committee on MS Registry Using Patient-Derived Multiple Sclerosis Severity Score (2014 CMSC ACTRIMS Annual Meeting)

EP01
Comparing Disability of MS Cohort in a Tertiary Clinic and Volunteer North American Research Committee on MS Registry Using Patient-Derived Multiple Sclerosis Severity Score

Thursday, May 29, 2014

Trinity Exhibit Hall

Ariel O Antezana, MD , Neurology, NYU School of Medicine, New York, NY

Joseph Herbert, MD , Neurology, NYU School of Medicine, New York, NY

Eric Chamot, MD, PhD , Department of Epidemiology, University of Alabama at Birmingham, Birmingham, AL

Amber R Salter, MPH , Biostatistics, University of Alabama at Birmingham, Birmingham, AL

Maayan Elyashiv, BS , Neurology, NYU School of Medicine, New York, NY

Tamar Bacon, BA , Department of Epidemiology, University of Alabama at Birmingham, Birmingham, AL

Ilya Kister, MD , Neurology, NYU School of Medicine, New York, NY

Background: Patient-Determined Disease Steps (PDDS) is a validated, patient-rated disability measure used in the ~36,000-enrollee strong NARCOMS (North American Research Committee on Multiple Sclerosis) Registry. We recently introduced Patient-Derived Multiple Sclerosis Severity Score (P-MSSS), which represents disease duration–adjusted mean ranks of PDDS among NARCOMS registrants. P-MSSS is calculated based exclusively on information provided by patients. P-MSSS is an easy-to-use tool for comparing disease severity in different patient populations and for tracking disease progression.

Objectives: To compare disease severity of Multiple Sclerosis (MS) patients in the North American Research Committee on Multiple Sclerosis (NARCOMS) volunteer registry and NYU Multiple Sclerosis Care Center using the novel Patient-Derived Multiple Sclerosis Severity Score.

Methods: We collected PDDS and disease duration on consecutive MS patients evaluated in NYU MS Center. P-MSSS of our cohort were calculated using published reference table (Kister et al., Neurology 2013;80:1) and compared to that of the reference

Results: 102 out of 108 MS patients completed PDDS and provided their disease duration (completion rate >94%). Mean age was 45.0 ± 11.9 (SD), disease duration 13.3 ± 8.5 (SD). Mean P-MSSS of 4.1 ± 2.8 (SD) was significantly lower than NARCOMS’ mean P-MSSS of 5.0 (p<0.0001, Mann Whiutley U Test).

Conclusions: Although self-referred volunteer registrants might have been expected to have milder disease course compared to tertiary clinic patients, our preliminary results led to the opposite conclusion. This finding could be due to variety of factors - more aggressive treatment of clinic patients and over-representation of ambulatory patients in our cohort. We plan to present results of analysis extended to entire clinic population seen over a 6-month period. P-MSSS was easy-to-use and quick-to-administer except those with considerable cognitive deficits. P-MSSS is a promising new tool for tracking disease progression in a busy MS clinic.

EP01 Comparing Disability of MS Cohort in a Tertiary Clinic and Volunteer North American Research Committee on MS Registry Using Patient-Derived Multiple Sclerosis Severity Score

EP01
Comparing Disability of MS Cohort in a Tertiary Clinic and Volunteer North American Research Committee on MS Registry Using Patient-Derived Multiple Sclerosis Severity Score