Amber Salter1, Nina P Thomas2, Tuula Tyry3, Gary R Cutter4, Ruth Ann Marrie5. 1. Division of Biostatistics, School of Medicine, Washington University, St. Louis, MO, USA. 2. Genentech, Inc., South San Francisco, CA, USA. 3. Dignity Health, St. Joseph's Hospital and Medical Center, Phoenix, AZ, USA. 4. Department of Biostatistics, University of Alabama at Birmingham, Birmingham, AL, USA. 5. Departments of Internal Medicine and Community Health Sciences, Max Rady College of Medicine, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, MB, Canada.
Abstract
BACKGROUND: Primary progressive multiple sclerosis (PPMS) represents 10%-15% of all multiple sclerosis (MS) diagnoses. Information regarding socio-demographic and clinical characteristics of persons with PPMS is limited. OBJECTIVE: To characterize persons with PPMS in the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry. METHODS: We compared demographic and health-related characteristics of NARCOMS Registry participants reporting PPMS in the spring 2015 update survey with those reporting relapsing-remitting multiple sclerosis (RRMS) and secondary progressive multiple sclerosis (SPMS), with characteristics of published PPMS cohorts. RESULTS: Of 8004 responders, 6774 self-reported a clinical course of PPMS, SPMS, or RRMS. The PPMS cohort ( n = 632, 9.3%) reported a mean (standard deviation (SD)) age of 64.3 (8.9) years; 62.7% were female; the SPMS and RRMS cohorts were younger and had a higher proportion of females. The NARCOMS PPMS cohort differed in age, time from onset and diagnosis, and proportion of females compared to population-based and clinical trial cohorts. Median (25%, 75%) number of comorbidities was 2 (1, 2) for each cohort with vascular comorbidities being most frequently reported. CONCLUSION: The NARCOMS population provides a different perspective on persons with PPMS than clinical trials. A better understanding of the characteristics of persons with PPMS may help address unmet needs in this population.
BACKGROUND: Primary progressive multiple sclerosis (PPMS) represents 10%-15% of all multiple sclerosis (MS) diagnoses. Information regarding socio-demographic and clinical characteristics of persons with PPMS is limited. OBJECTIVE: To characterize persons with PPMS in the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry. METHODS: We compared demographic and health-related characteristics of NARCOMS Registry participants reporting PPMS in the spring 2015 update survey with those reporting relapsing-remitting multiple sclerosis (RRMS) and secondary progressive multiple sclerosis (SPMS), with characteristics of published PPMS cohorts. RESULTS: Of 8004 responders, 6774 self-reported a clinical course of PPMS, SPMS, or RRMS. The PPMS cohort ( n = 632, 9.3%) reported a mean (standard deviation (SD)) age of 64.3 (8.9) years; 62.7% were female; the SPMS and RRMS cohorts were younger and had a higher proportion of females. The NARCOMS PPMS cohort differed in age, time from onset and diagnosis, and proportion of females compared to population-based and clinical trial cohorts. Median (25%, 75%) number of comorbidities was 2 (1, 2) for each cohort with vascular comorbidities being most frequently reported. CONCLUSION: The NARCOMS population provides a different perspective on persons with PPMS than clinical trials. A better understanding of the characteristics of persons with PPMS may help address unmet needs in this population.
Entities:
Keywords:
NARCOMS; Primary progressive multiple sclerosis; comorbidities; disease attributes; health care utilization; survey
Authors: Antoni Sicras-Mainar; Elena Ruíz-Beato; Ruth Navarro-Artieda; Jorge Maurino Journal: BMC Health Serv Res Date: 2017-12-29 Impact factor: 2.655
Authors: Xiaoming Jia; Lohith Madireddy; Stacy Caillier; Adam Santaniello; Federica Esposito; Giancarlo Comi; Olaf Stuve; Yuan Zhou; Bruce Taylor; Trevor Kilpatrick; Filippo Martinelli-Boneschi; Bruce A C Cree; Jorge R Oksenberg; Stephen L Hauser; Sergio E Baranzini Journal: Ann Neurol Date: 2018-07-03 Impact factor: 10.422