Social consequences of multiple sclerosis (1): early pension and temporary unemployment—a historical prospective cohort study

2009 ◽  
Vol 16 (1) ◽  
pp. 121-126 ◽  
Author(s):  
Claudia Christina Hilt Pfleger ◽  
Esben Meulengracht Flachs ◽  
Nils Koch-Henriksen

Multiple sclerosis affects young and middle-aged people and often leads to physical and cognitive handicaps. There is a need for detailed knowledge of the social consequences of the disease. We aim here to describe the course of the working life and career of multiple sclerosis patients at the time of onset and thereafter, in terms of probability of early pension and income development. All 2538 patients with multiple sclerosis in Denmark with disease onset between 1980 and 1989, identified through the Danish MS-Registry, were included in this study. Twenty matched control persons per patient were randomly drawn from the civil registration system. Information on economic status was retrieved from Statistics Denmark. A survival analysis technique was used with onset as the starting point. We found that the probability of remaining without early pension was at 5 years 70% for patients and 97% for controls, and at 20 years 22% for patients and 86% for controls. Due to lower rates for early pension, gross income with time was lower in patients than controls. We conclude that multiple sclerosis seriously affects the economic life of multiple sclerosis patients, even within a few years of onset.

2012 ◽  
Vol 2012 ◽  
pp. 1-6
Author(s):  
Derya Kaya ◽  
Egemen İdiman ◽  
Serkan Özakbaş

In a retrospective review of patients with acquired demyelinating disorders of the central nervous system, 133 patients (5.6%) whose diseases started in childhood, were selected from 2369 patients, who had medical records in the Neurology Department of Dokuz Eylul University. Out of 133, 98 had relapsing remitting multiple sclerosis, 21 had secondary progressive multiple sclerosis, 8 had clinically isolated syndrome, 3 had neuromyelitis optica, 2 had Marburg disease, and 1 had radiologically isolated syndrome. In 55 patients (41.3%), disease onset was before age 16. Polysymptomatic presentation (22.6%) was the most common initial feature. The EDSS scores ranged from 0 to 9 with a median of 2.0 () for 126 patients. MRI records of 111 patients were obtained. 97 patients had clinically definite multiple sclerosis. 11 MS patients (11.3%) did not initially present the diagnostic MRI features. All of the remaining multiple sclerosis patients fulfilled Barkhof-Tintore criteria (100%) and 88.7% fulfilled KIDMUS criteria. Cranial MRI of NMO patients was normal. Our findings demonstrate some important clinical and paraclinical features that can help the literature on acquired demyelinating disorders of childhood by utilizing data from Western Turkey.


2016 ◽  
Vol 23 (8) ◽  
pp. 1148-1156 ◽  
Author(s):  
Julie Yoon Moberg ◽  
Bjarne Laursen ◽  
Nils Koch-Henriksen ◽  
Lau Caspar Thygesen ◽  
Anne Brødsgaard ◽  
...  

Background: Little is known about the consequences of parental multiple sclerosis (MS) on offspring’s socioeconomic circumstances. Objective: To investigate employment, disability pension and income in offspring of parents with MS compared with matched reference persons in a nationwide register-based cohort study. Methods: All Danish-born persons with onset of MS during 1950–1986 were retrieved from the Danish Multiple Sclerosis Registry. Their offspring were identified using the Civil Registration System. One random offspring from each sibship was matched by sex and year of birth with eight random reference persons. Results: We included 2456 MS offspring and 19,648 reference persons. At age 30, employment was lower among MS offspring than reference children (odds ratio (OR): 0.89; 95% confidence interval (CI): 0.84–0.95; p = 0.0003), and they more often received disability pension (OR: 1.31; 95% CI: 1.15–1.50; p < 0.0001) at ages 30 and 40 but not at age 50. Although the mean income was not significantly lower for the MS offspring cohort, most of them attained an annual personal income below 250,000 DKK (Danish krone), that is, ~33,650 EUR (OR: 0.91; 95% CI: 0.84–0.99; p = 0.04). Conclusion: Having had a parent with MS may affect employment and increase the risk of disability pension and low income in adult life.


2003 ◽  
Vol 9 (5) ◽  
pp. 509-514 ◽  
Author(s):  
A Lerdal ◽  
E G Celius ◽  
T Moum

Objective: To explore the relationship between fatigue, sociodemographic and clinical variables in a population of patients with multiple sclerosis (MS). Rationale: There is a need to identify empirical relationships with possible antecedents of fatigue among patients with MS. Methods: A mailed questionnaire designed to survey sociodemographic variables and the Fatigue Severity Scale (FSS) was mailed to 502 individuals from the population of patients with definite MS in the city of O slo. A total of 368 (73%) responded. C linical data were collected from the O slo C ity MS-Registry. Results: The prevalence of fatigue in this population was 60.1%. The FSS score showed a negative correlation with education (r =-0.15, P <0.01) and a positive correlation with age (r =0.20, P B-0.001) and time since disease onset (r =0.11, P B-0.05). When controlled for gender, level of education and time since disease onset, the data showed a positive relationship between fatigue and age (P B-0.001) among patients with primary progressive (PP) disease. This relationship between age and fatigue was not found among patients with relapsing-remitting/secondary progressive (RR/SP) disease. Conclusion: The negative relationship between level of formal educatio n (FE) and fatigue among individuals with RR/SP disease suggests that behavioral factors may be among the antecedents of fatigue in this patient group. In contrast to normative data from the general population, our findings revealed no differences in fatigue related to gender. Thus, this study supports the hypothesis that there are disease-specific antecedents of fatigue among patients with MS.


2002 ◽  
Vol 8 (5) ◽  
pp. 415-419 ◽  
Author(s):  
E LJ Hoogervorst ◽  
C H Polman ◽  
F Barkhof

Objective: Multiple sclerosis (MS) patients develop varying degrees of cerebral atrophy, which may already begin at disease onset. The purpose of this study is to examine the effect of steroid treatment on cerebral volume in MS patients. Methods: Thirty-five MS patients participating in a clinical trial of oral interferon beta, which included monthly MRI, were included in this study. They suffered from an acute relapse and were treated with intravenous methylprednisolone (IV-MP); 13 of the patients were treated with oral prednisolone tapering after IV-MP. The last MRI scan before and the first (and second for oral tapering patients) scan after IV-MP treatment were used for measuring parenchymal fraction (PF) and ventricular fraction (VF). Changes in PF and VF were analysed using Student’s t test. Results: For the total population no significant changes in PF or VF were found. However, the subgroup of patients receiving oral tapering after IV-MP showed changes, compatible with atrophy in both PF and VF, that were significant immediately after IV-MP treatment and still persisted (though not statistically significant anymore) after a mean interval of 30 days. The magnitude of these changes was about the same as the annual change in cerebral volume as reported in natural history studies. Conclusion: Our data indicate that short courses of intravenous steroids (restricted to three or five days) have no major impact, whereas prolonged treatment with oral tapering does significantly affect brain volume. These findings are important for longitudinal studies and clinical trials in which brain volume is used as an outcome measure.


2003 ◽  
Vol 9 (5) ◽  
pp. 467-471 ◽  
Author(s):  
L ME Grimaldi ◽  
A Pincherle ◽  
F Martinelli-Boneschi ◽  
M Filippi ◽  
F Patti ◽  
...  

We amplified sequences of the Chlamydia pneumoniae (C P) major-outer membrane protein in the cerebrospinal fluid (CSF) from 23 of 107 (21.5%) relapsing-remitting or secondary progressive multiple sclerosis (MS) patients and two of 77 (2.6%) patients with other neurological diseases (OND) (P =0.00022). C P+ patients showed magnetic resonance imaging (MRI) evidence of more active disease (P =0.02) compared to CP-MS patients and tended to have an anticipation of age at disease onset (32.39-12 versus 28.59-10 years; P =ns) causing a longer disease duration (7.59-5 versus 4.49-4 years; P =0.016) at the time of clinical evaluation. These findings, although indirectly, suggest that C P infection of the central nervous system (C NS) might affect disease course in a subgroup of MS patients.


2021 ◽  
Vol 12 ◽  
Author(s):  
Katharina Klumbies ◽  
Rebekka Rust ◽  
Jan Dörr ◽  
Frank Konietschke ◽  
Friedemann Paul ◽  
...  

Background: Epigallocatechin gallate (EGCG) is an anti-inflammatory agent and has proven neuroprotective properties in animal models of multiple sclerosis (MS). Optical coherence tomography (OCT) assessed retinal thickness analysis can reflect treatment responses in MS.Objective: To analyze the influence of EGCG treatment on retinal thickness analysis as secondary and exploratory outcomes of the randomized controlled Sunphenon in Progressive Forms of MS trial (SUPREMES, NCT00799890).Methods: SUPREMES patients underwent OCT with the Heidelberg Spectralis device at a subset of visits. We determined peripapillary retinal nerve fiber layer (pRNFL) thickness from a 12° ring scan around the optic nerve head and thickness of the ganglion cell/inner plexiform layer (GCIP) and inner nuclear layer (INL) within a 6 mm diameter grid centered on the fovea from a macular volume scan. Longitudinal OCT data were available for exploratory analysis from 31 SUPREMES participants (12/19 primary/secondary progressive MS (PPMS/SPMS); mean age 51 ± 7 years; 12 female; mean time since disease onset 16 ± 11 years). We tested the null hypothesis of no treatment*time interaction using nonparametric analysis of longitudinal data in factorial experiments.Results: After 2 years, there were no significant differences in longitudinal retinal thickness changes between EGCG treated and placebo arms in any OCT parameter (Mean change [confidence interval] ECGC vs. Placebo: pRNFL: −0.83 [1.29] μm vs. −0.64 [1.56] μm, p = 0.156; GCIP: −0.67 [0.67] μm vs. −0.14 [0.47] μm, p = 0.476; INL: −0.06 [0.58] μm vs. 0.22 [0.41] μm, p = 0.455).Conclusion: Retinal thickness analysis did not reveal a neuroprotective effect of EGCG. While this is in line with the results of the main SUPREMES trial, our study was probably underpowered to detect an effect.Clinical Trial Registration:www.ClinicalTrials.gov, identifier: NCT00799890.


Sensors ◽  
2021 ◽  
Vol 21 (24) ◽  
pp. 8436
Author(s):  
Marco Trombini ◽  
Federica Ferraro ◽  
Giulia Iaconi ◽  
Lucilla Vestito ◽  
Fabio Bandini ◽  
...  

Digital medical solutions can be very helpful in restorative neurology, as they allow the patients to practice their rehabilitation activities remotely. This work discloses ReMoVES, an IoMT system providing telemedicine services, in the context of Multiple Sclerosis rehabilitation, within the frame of the project STORMS. A rehabilitative protocol of exercises can be provided as ReMoVES services and integrated into the Individual Rehabilitation Project as designed by a remote multidimensional medical team. In the present manuscript, the first phase of the study is described, including the definition of the needs to be addressed, the employed technology, the design and the development of the exergames, and the possible practical/professional and academic consequences. The STORMS project has been implemented with the aim to act as a starting point for the development of digital telerehabilitation solutions that support Multiple Sclerosis patients, improving their living conditions. This paper introduces a study protocol and it addresses pre-clinical research needs, where system issues can be studied and better understood how they might be addressed. It also includes tools to favor remote patient monitoring and to support the clinical staff.


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