ObjectivesTo assess the potential of an online platform, PatientsLikeMe.com (PLM), for research in multiple sclerosis (MS). An investigation of the role of body mass index (BMI) on MS disease course was conducted to illustrate the utility of the platform.MethodsFirst, we compared the demographic characteristics of subjects from PLM and from a regional MS center. Second, we validated PLM’s patient-reported outcome measure (MS Rating Scale, MSRS) against standard physician-rated tools. Finally, we analyzed the relation of BMI to the MSRS measure.ResultsCompared with 4,039 MS Center patients, the 10,255 PLM members were younger, more educated, and less often male and white. Disease course was more often relapsing remitting, with younger symptom onset and shorter disease duration. Differences were significant because of large sample sizes but small in absolute terms. MSRS scores for 121 MS Center patients revealed acceptable agreement between patient-derived and physician-derived composite scores (weighted kappa = 0.46). The Walking domain showed the highest weighted kappa (0.73) and correlation (rs = 0.86) between patient and physician scores. Additionally, there were good correlations between the patient-reported MSRS composite and walking scores and physician-derived measures: Expanded Disability Status Scale (composite rs = 0.61, walking rs = 0.74), Timed 25 Foot Walk (composite rs = 0.70, walking rs = 0.69), and Ambulation Index (composite rs = 0.81, walking rs = 0.84). Finally, using PLM data, we found a modest correlation between BMI and cross-sectional MSRS (rho = 0.17) and no association between BMI and disease course.ConclusionsThe PLM population is comparable to a clinic population, and its patient-reported MSRS is correlated with existing clinical instruments. Thus, this online platform may provide a venue for MS investigations with unique strengths (frequent data collection, large sample sizes). To illustrate its applicability, we assessed the role of BMI in MS disease course but did not find a clinically meaningful role for BMI in this setting.
These observations provide reassurance for women newly diagnosed that OC use, past or current, does not appear to be associated with greater risk of relapses.
The 2D:4D ratio, a proxy for prenatal androgen levels, differs in men with and without MS ABSTRACT Objective: To determine whether the 2D:4D ratio (ratio of the second and fourth digit lengths), a proxy for lower prenatal androgen to estrogen ratio, differs in men with and without multiple sclerosis (MS) using a case-control study design. Methods:We obtained 2 digital scans of the right hand for men with MS presenting to a scheduled clinic visit at a large MS referral center, and for men without autoimmune or endocrine diseases. All individuals were aged 18 to 65 years, right-handed, and reported no prior digit trauma. We calculated a mean 2D:4D ratio using digital calipers. In participants with MS, we assessed age at first MS symptoms, MS type, and the MS Severity Score; 51 had provided a testosterone level within 10 years of symptom onset. Our primary analysis was a cross-sectional comparison of the 2D:4D ratio between men with and without MS, using a 2-sample t test for independent samples assuming unequal variance.Results: In total, we scanned 137 men with MS and 145 men without MS. A statistically significant association between 2D:4D ratio and MS status was observed in the univariate logistic regression model (p , 0.05). These differences were not associated with age or race, which differed between the 2 groups. In participants with MS, the 2D:4D ratio was not correlated with MS type, age at first symptoms, or MS Severity Score (p . 0.15 for each), and it was not correlated with adult testosterone levels (r 5 0.06, p 5 0.68, n 5 51).Conclusions: During the prenatal period, low androgens could represent a risk factor for MS.
BackgroundLittle is known about risk attitudes and risk perceptions in multiple sclerosis (MS).ObjectivesThe objectives of this paper are to investigate the range of risk attitudes and risk perceptions and examine associations between risk attitudes and risk perceptions and demographic and clinical features of the disease.MethodsA total of 223 individuals completed a risk questionnaire. Risk attitude was measured using two rating scales and a standard gamble scenario. Risk perception was measured by asking participants to estimate the likelihood of disease progression and the likelihood of minor and serious side effects associated with common MS therapies.ResultsParticipants were risk neutral overall and risk averse on issues related to health and safety. There was a significant association between disease duration and risk attitude, with patients with longer disease duration showing greater tolerance for risk. On the standard gamble scenario, males were significantly more likely to take treatments with a likelihood of death of 1:10,000 or 1:100,000 than females. Individuals with higher disability or a progressive disease course were significantly more likely to expect progression at two, five and 10 years.ConclusionIndividuals with MS demonstrate low tolerance for risk. Risk attitudes and perceptions are influenced by some demographic and clinical features of the disease.
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