People's self-assessment gives important insights into multiple sclerosis (MS).
•Over 4,500 people with MS participated in this survey on their disease perception.
•In RRMS with less disability, fatigue and vision impairment were most bothersome.
•Over 60% of people with RRMS reported relapse-independent progression.
•Symptomatic pharmacological therapy was more prevalent in immunotherapy users.
AbstractBackgroundAssessment of the disease course by people with multiple sclerosis (pwMS) themselves is important for a better understanding of the complex disease, patient counseling and treatment decisions. This may also facilitate identifying the often-unnoticed transition from relapsing-remitting (RRMS) to secondary progressive multiple sclerosis (SPMS).
ObjectiveMS Perspectives was designed to collect data on patients' self-assessment of multiple sclerosis (MS) symptoms, relapse-independent progression, and impact on everyday life.
MethodsMS Perspectives is a cross-sectional online survey conducted among adult pwMS in Germany. The questionnaire included 36 items on sociodemographic and clinical characteristics as well as pharmacological and non-pharmacological treatment.
ResultsIn total, 4555 pwMS completed the survey between December 2021 and February 2022, 69.2% had RRMS, 15.1% had SPMS. Relapse-independent worsening of symptoms was reported by 88.9% of RRMS patients with marked to severe and by 61.8% with no or mild to moderate disability. Problems with walking were most frequently (32.1%) mentioned as most bothersome by RRMS patients with marked to severe disability, fatigue, and cognitive impairment by RRMS patients with no or mild to moderate disability.
ConclusionMS Perspectives gives an important insight in the self-assessed disease course and impact on daily life in a large-scale cohort of pwMS.
KeywordsMultiple sclerosis
Secondary progressive
Relapsing-remitting
Survey
© 2022 The Authors. Published by Elsevier B.V.
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