Symptomatic treatment in multiple sclerosis—interim analysis of a nationwide registry

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Multiple sclerosis (MS) is a chronic inflammatory disease of the central nervous system and one of the main causes of disability in young adults.1 More than 200 000 people are affected in Germany.3
At the beginning disease, exacerbations lead to functional impairment with remission between relapses (relapsing remitting MS [RRMS]). With ongoing disease activity, remissions will be incomplete and disability may accumulate over the course of time progressively (secondary progressive MS). In about 10% of all patients, disability progresses without relapses (primary progressive MS) from onset of the disease.4 Treatment aims to ameliorate functional impairment in acute relapses (glucocorticosteroids are given for the treatment of acute exacerbations) and/or to prevent such relapses (immune modulation for prophylactic treatment). Treatment of symptoms in progressed patient aims to mitigate functional and emotional impairment due to MS. Symptoms such as spasticity, voiding disorders, depression, and pain will be observed in a majority of patients with advanced disability. Symptomatic treatment can be pharmacological (medication) or non‐pharmacological (e.g. physical therapy, psychotherapy). Optimal care has to comprise treatment for acute worsening (i.e. relapse treatment), treatment for the prevention of new relapse or disease progression (i.e. prophylactic treatment), and treatment of symptoms due to MS.6
With accumulating disability, almost all patients report symptoms.1 It is unclear how often they are recognized by physicians and how often they are treated adequately.
The nationwide MS registry was initiated in 2001 to collect epidemiological data on the number of patients with MS, course of disease, symptoms, treatment patterns, and on the healthcare and social situation. Patients with a diagnosis of MS and clinically isolated syndrome were allowed to enter the study and only if they gave their written and informed consent. Data are collected and documented locally by the participating centers. Data are checked centrally by the MS Forschungs‐ und Projektentwicklungs gGmbH for double entries, for completeness of data and for inconsistencies. In such cases, questions are raised to the local centers. Based on a pilot study phase of 2 years, data sets have been modified to the actual form. In 2009, an interim analysis was performed presenting demographic and clinical data. Our subcohort is based on this population.7 The aim of the registry is to gain information on the clinical data of patients and on treatment patterns. Unmet needs should be identified. Optimization of the medical care of patients with MS is the aim.9 Previous publications reported that symptoms like fatigue, spasticity, bladder dysfunctions, ataxia, and tremor (to name the most common ones with respective prevalence ranging from 46.8% to 63.1%) are the most frequent ones.8 Based on the data from the registry, we want to assess factors predictive for symptomatic treatment.
The primary aim of the current study is to analyze the symptomatic treatment situation in patients with MS based on the data of the register of the German MS society. Secondary aims are to elucidate factors associated with symptomatic treatment.

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