Abstract
BackgroundPeople with multiple sclerosis (MS) experience a wide range of unpredictable and variable symptoms. The symptomatology of MS has previously been reported in large sample registry studies; however, some symptoms may be underreported in registries based on clinician-reported outcomes and how the symptoms are associated with quality of life (QoL) are often not addressed.The aim of this study was to comprehensively evaluate the frequency of selected MS related symptoms and their associations with disability and QoL in a large self-report study.MethodsWe conducted a cross-sectional questionnaire survey among all patients at the Danish Multiple Sclerosis Center, Copenhagen University Hospital, Denmark. The questionnaire included information on clinical and sociodemographic characteristics, descriptors of QoL and disability, as well as prevalence and severity of the following MS symptoms: impaired ambulation, spasticity, chronic pain, fatigue, bowel and bladder dysfunction, and sleep disturbances.ResultsQuestionnaires were returned by 2244/3606 (62%). Participants without MS diagnosis or incomplete questionnaires were excluded, n = 235. A total of 2009 questionnaires were included for analysis (mean age 49.4 years; mean disease duration 11.7 years; and 69% were women).The most frequently reported symptoms were bowel and bladder dysfunction (74%), fatigue (66%), sleep disturbances (59%), spasticity (51%) and impaired ambulation (38%). With exception of fatigue and sleep disturbances, all other symptoms increased in severity with higher disability level. Invisible symptoms (also referred to as hidden symptoms) such as fatigue, pain and sleep disturbances had the strongest associations with the overall QoL.ConclusionWe found invisible symptoms highly prevalent, even at mild disability levels. Fatigue, pain and sleep disturbances had the strongest associations with the overall QoL and were more frequently reported in our study compared with previous registry-based studies. These symptoms may be underreported in registries based on clinician reported outcomes, which emphasizes the importance of including standardized patient reported outcomes in nationwide registries to better understand the impact of the symptom burden in MS.
Highlights
People with multiple sclerosis (MS) experience a wide range of unpredictable and variable symptoms
Symptom prevalence tables established by Kister et al, based on data from the North American Research Committee on Multiple Sclerosis (NARCOMS), have shown that mobility impairment and severity of pain, spasticity, fatigue, and bowel and bladder dysfunction increased in frequency in association with increasing disease duration
Clinical data from the included people with MS (PwMS) cohort have been compared with data from the Danish Multiple Sclerosis Registry and were found representative with the Danish Multiple Sclerosis Center (DMSC) population registered in the registry [14]
Summary
People with multiple sclerosis (MS) experience a wide range of unpredictable and variable symptoms. A German registry study, which aimed to assess the prevalence of selected MS related symptoms, found that the most frequently reported symptoms, over the course of the disease, were fatigue (58%), spasticity (48%), voiding disorder (44%), ataxia/tremor (36%) and pain (34%) [3]. Symptom prevalence tables established by Kister et al, based on data from the North American Research Committee on Multiple Sclerosis (NARCOMS), have shown that mobility (gait) impairment and severity of pain, spasticity, fatigue, and bowel and bladder dysfunction increased in frequency in association with increasing disease duration. Sleep disturbances may be due to MS related symptoms such as pain, spasticity and voiding dysfunction, and be a contributing factor to fatigue [6] This illustrates the wide-ranging symptomatology of MS, which consists of a complex interplay between physical, cognitive and mental symptoms
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