Abstract
ObjectiveThe aim was to describe a broad range of health dimensions in possibly benign multiple sclerosis (MS) hypothesizing that despite some limitations there is a high adaptation to the disease.MethodsAll patients from an outpatient university clinic data registry with an Expanded Disability Status Scale (EDSS) ≤3.5 and disease duration ≥15 years were addressed in a cross‐sectional study. Physical impairment, neuropsychological functioning but also influence on activities and patient reported outcome measures including coping were studied.ResultsOne hundred and twenty‐five patients could be included (mean EDSS: 2.8; mean disease duration: 24 years). Cognitive impairment was minor (8%) but fatigue (73%) and depression (46%) were prevalent. Nevertheless, QOL and daily activities seemed to be less affected. Patients showed high social support, coping abilities, and sense of coherence, which was predictive for their perceived benignity of the disease. Based on the EDSS alone, we estimated the rate of benign MS after 15 years of MS as high as 23% decreasing to 16% if cognition was included in the definition. However, cognitive performance was not relevantly associated with other outcomes.ConclusionCommon benign MS definitions seem to simplify a complex disease picture where different impairments and personal resources lead to more or less impact on people’s lives.
Highlights
Multiple sclerosis (MS) is a chronic, unpredictable disease with a broad variability in quality, severity, and evolution dynamics of symptoms (Degenhardt, Ramagopalan, Scalfari, & Ebers, 2009)
The term benign multiple sclerosis (BMS) has been used to define patients with a milder disease course characterized by low disability assessed by the Expanded Disability Status Scale (EDSS) related to disease duration (Lublin & Reingold, 1996; Ramsaransing & De Keyser, 2006)
Taking it differently: do neurologist have the right to deny a possibly benign course of disease? The main aim of this study was to describe a broad range of health dimensions in rela‐ tion to a BMS concept based on EDSS and disease duration
Summary
Multiple sclerosis (MS) is a chronic, unpredictable disease with a broad variability in quality, severity, and evolution dynamics of symptoms (Degenhardt, Ramagopalan, Scalfari, & Ebers, 2009). With higher sensitivity of diagnostic criteria and increasing number of licensed treatments the open question is if all patients need to be treated as a benign variant of the disease might not exist. Taking it differently: do neurologist have the right to deny a possibly benign course of disease? The main aim of this study was to describe a broad range of health dimensions in rela‐ tion to a BMS concept based on EDSS and disease duration. We hypothesized that despite of some limitations patients classified as BMS show a high level of adaption to the disease
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