The multiple sclerosis relapse experience: patient-reported outcomes from the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry

Molly Nickerson, Ruth Ann Marrie, Molly Nickerson, Ruth Ann Marrie

Abstract

Background: Among patients with relapsing-remitting multiple sclerosis, relapses are associated with increased disability and decreased quality of life. Relapses are commonly treated with corticosteroids or left untreated. We aimed to better understand patient perceptions of the adequacy of corticosteroids in resolving relapse symptoms.

Methods: We examined self-reported data from 4482 participants in the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry regarding evaluation, treatment, and recovery from relapses. Pearson's chi-square test was used to analyze categorical variables, while logistic regression was used to assess factors associated with patients' perceptions.

Results: Forty percent (1775/4482) of respondents were simply observed for disease worsening, whereas 25% (1133/4482) were treated with intravenous methylprednisolone (IVMP) and 20% (923/4482) with oral corticosteroids; additional treatments included adrenocorticotropic hormone, plasmapheresis, intravenous immunoglobulin, and others. Among patients who responded to questions about their most recent relapse, 32% (363/1123) of IVMP-treated and 34% (301/895) of oral corticosteroid-treated patients indicated their symptoms were worse one month after treatment than pre-relapse, as did 39% (612/1574) of observation-only patients; 30% (335/1122) of IVMP-treated patients indicated their treatment made relapse symptoms worse (13% [145/1122]) or had no effect (17% [190/1122]), as did 38% (340/894) of oral corticosteroid-treated patients (worse, 13% [116/894]; no effect, 25% [224/894]) and 76% (1162/1514) of observation-only patients (worse, 17% [264/1514]; no change, 59% [898/1514]).

Conclusions: Overall, patients with relapsing multiple sclerosis who receive treatment report better outcomes than those who are simply observed. However, a sizeable percentage of patients feel that their symptoms following corticosteroid treatment are worse than pre-relapse symptoms and that treatment had no effect or worsened symptoms. Patient perceptions of relapse treatment deserve more attention, and more effective treatment options are needed.

Figures

Figure 1
Figure 1
Distribution of relapse treatments among patients with a relapse (n=4482); patients could chose more than 1 option. ACTH, adrenocorticotropic hormone; Dex, dexamethasone; IM, intramuscular; IV, intravenous; IVIG, intravenous immunoglobulin; IVMP, intravenous methylprednisolone; MP, methylprednisolone; Pred, prednisone.
Figure 2
Figure 2
Subjective ratings of (A) symptom improvement and (B) effect of treatment on recovery among all patients who experienced a relapse, and subgroups of interest (ie, patients whose relapses were managed with observation only or patients treated with corticosteroid). A. Symptom improvement, based on responses to the following question: “As compared to the symptoms just before my most recent relapse, my overall MS symptoms 1 month after the relapse treatment were…” B. Effect of treatment on recovery, based on responses to the following question: “As a result of my treatment, my recovery was…”.
Figure 3
Figure 3
Subjective ratings of (A) symptom improvement and (B) effect of treatment on recovery among corticosteroid-treated patients. IVMP, intravenous methylprednisolone.

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