Impact of multiple sclerosis relapse: The NARCOMS participant perspective

Abstract

Acute relapses continue to be a significant aspect of multiple sclerosis (MS) on both the epidemiologic level and the individual patient level. Past work demonstrates residual disability from relapses as well as high patient-reported rates of ineffective relapse treatment. To better characterize the impact of MS relapses on the patient, a relapse-specific survey was administered through the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry to 1000 registry participants who had reported at least one relapse in the past 12 months. Thirty percent of respondents confirmed lack of relapse treatment efficacy at one month and at three months. Relapses also impacted socioeconomic measures; for individuals still going to school or working, more than half missed days and their average loss of school or work was 12.7 days. An impact on household tasks was reported by 68% of respondents. A healthcare facility such as a hospital, emergency room or urgent care center was utilized by 20.4% of respondents. The most common relapse symptoms were fatigue, weakness of the lower extremity, sensory symptoms, problems walking, and weakness of the upper extremity. Of the respondents who reported receiving corticosteroid treatment (53.3%), over half reported an adverse event. However, this was not a significant factor in dictating whether or not respondents would seek a different treatment on their next relapse, although 31% would choose a different treatment for their next relapse. Relapses continue to be an impactful experience that requires continued clinical attention. Improved follow-up from relapses and relapse treatment might be beneficial.

Cross‐sectional analysis of the Myasthenia Gravis Patient Registry: Disability and treatment

“…To better understand the status of patient care, the Myasthenia Gravis Foundation of America (MGFA) established a patient registry in collaboration with the University of Alabama at Birmingham, starting in 2013. The MG Patient Registry (MGR) is modeled after the North American Research Committee on Multiple Sclerosis Registry (NARCOMS) and includes voluntarily provided information from patients obtained through questionnaires addressing basic demographics, diagnosis, treatment, and insurance status . The data obtained also included validated MG‐specific disease severity scales: the MG—Activities of Daily Living (MG‐ADL) and the 15‐item MG Quality of Life‐15 (MG‐QOL15) instruments .…”

“…The MG Patient Registry (MGR) is modeled after the North American Research Committee on Multiple Sclerosis Registry (NARCOMS) and includes voluntarily provided information from patients obtained through questionnaires addressing basic demographics, diagnosis, treatment, and insurance status. 7 The data obtained also included validated MG-specific disease severity scales: the MG-Activities of Daily Living (MG-ADL) and the 15-item MG Quality of Life-15 (MG-QOL15) instruments. [8][9][10][11][12] The MGR has previously identified differential gender effects of MG and its treatment in quality of life and assessment of adverse effects to prednisone treatment.…”

Relapses in Multiple Sclerosis: Definition, Pathophysiology, Features, Imitators, and Treatment

“…It was followed by leg-foot weakness (63%), numbness-tingling (55%), difficulty in walking (51%), hand-arm weakness (49%), coordination difficulties (47%), dizziness-balance (46%), muscle tightness-stiffness (46%), cognition (thinking-memory) problems (42%), vision problems (34%), bladder problems (31%), painburning-itching (27%), bowel problems (19%), speech changes (16%), chewing-swallowing problems (14%), and sexual problems (8.5%) (33). Visual, sensory, and brainstem relapses were found more frequently in early disease and in younger patients.…”

“…More than half of patients (55.2%) stated that their school or work lives were impacted and it was shown that this duration was 12.7 days on average (33).…”

Glucocorticoids safety administration in multiple sclerosis treatment: A focus on physicians’ adherence to avoid side effect

“…30 Among MS patients from NARCOMS registered 17% indicated serious adverse effects after a long-period of GCs treatment, the majority completed treatment; only 0.8% stopped therapy because of adverse effects. 31 In our study nobody was refused the GCs therapy.…”