RESUMEN
The North American Research Committee on Multiple Sclerosis is a voluntary patient registry with more than 38,000 registrants as of 2015. In a recent collaborative project, longitudinal data on patient-perceived impairment in 11 domains commonly affected by multiple sclerosis were examined and tabulated as a function of disease duration. The patterns of disability accumulation differed by domain. Certain symptoms (sensory, fatigue) were particularly prevalent early in the disease. Other symptoms (mobility, hand function, fatigue, bowel/bladder dysfunction, spasticity) were progressively more common with longer disease duration. Some symptoms (vision, cognition, sensory, pain, depression) were relatively common early on in multiple sclerosis, but did not appear to be more frequent with longer disease duration. Ongoing research includes studies of the impact of disease-modifying therapy and symptomatic treatment on patient-perceived impairment over the disease course.
Asunto(s)
Esclerosis Múltiple/epidemiología , Esclerosis Múltiple/fisiopatología , Sistema de Registros , Evaluación de la Discapacidad , Progresión de la Enfermedad , Femenino , Humanos , Masculino , Prevalencia , Características de la Residencia , Índice de Severidad de la EnfermedadRESUMEN
The North American Research Committee on Multiple Sclerosis (NARCOMS) Registry is a database that contains information from over 35,000 patient volunteers on symptom severity in 11 domains commonly affected in multiple sclerosis (MS): mobility, hand function, vision, fatigue, cognition, bowel/bladder function, sensory, spasticity, pain, depression, and tremor/coordination. The Registry affords a unique opportunity to study the frequency and severity of domain-specific impairment in a contemporary, mostly treated MS cohort over the course of the disease. The objective of this work was to calculate symptom prevalence in each of the 11 domains for years 0 to 30 from symptom onset. The resulting "symptom prevalence tables" demonstrate that a majority of participants perceive at least some degree of impairment in most domains as early as the first year of disease. The severity of impairment increases with disease duration across all domains, but the patterns of disability accumulation differ. The symptom prevalence tables illustrate the magnitude of perceived impact of the disease and highlight the extent of unmet need in symptomatic management. The tables are easy to use and allow MS patients and their clinicians to compare an individual's own impairment in any of the 11 domains to that of NARCOMS participants with the same disease duration.