Characteristics of multiple sclerosis at onset and delay of diagnosis and treatment in Spain (The Novo Study)

Abstract

Multiple sclerosis (MS) is a disease supposedly of autoimmune origin, with reactivity directed against myelin antigens. From the neuropathological point of view, MS produces inflammation, demyelination and axonal and neuronal degeneration. Inflammatory phenomena are predominant in the initial phase of the disease, followed later by neurodegenerative processes. Over the last decade, early treatment, during the most inflammatory phase of the disease, has been considered the best strategy to treat MS. Accordingly, we decided to determine the periods of delay between the first symptoms and the time to the first medical visit, the time to referral to a specialised MS unit, the delay in undertaking clinical and paraclinical tests, the diagnostic criteria used and the overall delay in diagnosis and treatment. The median time from onset of first symptoms to the first visit to a physician was 19.2 months, which represented the greatest delay. The median time between this initial medical consultation and the confirmation of the diagnosis by a specialised MS unit was 5.7 months, and the overall time from symptom onset to diagnosis was 24.9 months (2.08 years). The median time between onset of the first symptoms and the decision to give the first treatment was 2 years. The most important delay was that from symptom onset to the first medical visit, with the other delays being less. Thus, it is during this initial period that greater effort is required in order to reduce the time to diagnosis, by increasing awareness of the problem of MS among the general population and primary care physicians.

Characteristics and predictors of progression in an Egyptian multiple sclerosis cohort: a multicenter registry study

“…The median duration from symptom onset to diagnosis in our series was 24.1 months, which is similar to the Novo study, where the median time to diagnosis was 24.9 months 22. This is explained by the lack of awareness of MS symptoms, especially symptoms like numbness and diplopia, slight visual blurring that can resolve spontaneously and pass unnoticed.…”

The Prevalence of Bipolar Disorders and Association With Quality of Life in a Cohort of Patients With Multiple Sclerosis

“…Retrospectively evaluating the primary etiology in diagnostic delay is intrinsically difficult. To date, population based studies in Croatia (53), Canada (54), Denmark (55), Spain (56) and the United States (23, 57) have documented referral and diagnostic delays in persons with MS, attributable to availability of subspecialty services, age and nature of initial presentation. Marrie et al, (57) in particular, have written at length about diagnostic delay in MS citing a mean delay of 7.03 years, confirming association with age-of-onset and noting increased risk of delay with comorbid mental (and non-psychiatric) confounders, which also seem to increase disability at presentation.…”

Incidence of multiple sclerosis among European Economic Area populations, 1985-2009: the framework for monitoring

“…The shortening of MS diagnostic delays in post-1985 surveys, likely restricted to the RRMS form [54], has frequently been described in Italian populations [28,54] but such intervals tend to be more stable in Nordic populations [59]. Diagnostic delay after symptom onset decreased from five years in the mid- or late 1980s in Norway and Italy to two years in the last decade in Spain [26,28,61]. We believe that part of the rise in MS incidence reflects improved access to neurological services at ages considerably later than age at MS onset, with it being impossible, in cases where mild first relapses are neglected, to capture patients who never reach neurological experts.…”