dc.contributor.author | Musallam, Alexander | |
dc.contributor.author | Vaughan, Timothy | |
dc.contributor.author | Wicks, Paul | |
dc.contributor.author | Bove, Riley Marie | |
dc.contributor.author | Secor, Elizabeth | |
dc.contributor.author | Healy, Brian Curran | |
dc.contributor.author | Glanz, Bonnie | |
dc.contributor.author | Greeke, Emily Elizabeth | |
dc.contributor.author | Weiner, Howard Lee | |
dc.contributor.author | Chitnis, Tanuja | |
dc.contributor.author | De Jager, Philip Lawrence | |
dc.date.accessioned | 2013-05-13T19:03:30Z | |
dc.date.issued | 2013 | |
dc.identifier.citation | Bove, Riley Marie, Elizabeth Secor, Brian Curran Healy, Alexander Musallam, Timothy Vaughan, Bonnie Glanz, Emily Elizabeth Greeke, et al. 2013. Evaluation of an online platform for multiple sclerosis research: Patient description, validation of severity scale, and exploration of BMI effects on disease course. PLoS ONE 8(3): e59707. | en_US |
dc.identifier.issn | 1932-6203 | en_US |
dc.identifier.uri | http://nrs.harvard.edu/urn-3:HUL.InstRepos:10622928 | |
dc.description.abstract | Objectives: To 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. Methods: First, 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. Results: Compared 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. Conclusions: The 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. | en_US |
dc.language.iso | en_US | en_US |
dc.publisher | Public Library of Science | en_US |
dc.relation.isversionof | doi:10.1371/journal.pone.0059707 | en_US |
dc.relation.hasversion | http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3603866/pdf/ | en_US |
dash.license | LAA | |
dc.subject | Biology | en_US |
dc.subject | Population Biology | en_US |
dc.subject | Epidemiology | en_US |
dc.subject | Disease Informatics | en_US |
dc.subject | Computer Science | en_US |
dc.subject | Computer Applications | en_US |
dc.subject | Web-Based Applications | en_US |
dc.subject | Information Technology | en_US |
dc.subject | Medicine | en_US |
dc.subject | Clinical Immunology | en_US |
dc.subject | Autoimmune Diseases | en_US |
dc.subject | Multiple Sclerosis | en_US |
dc.subject | Clinical Research Design | en_US |
dc.subject | Cohort Studies | en_US |
dc.subject | Cross-Sectional Studies | en_US |
dc.subject | Survey Research | en_US |
dc.subject | Neurology | en_US |
dc.subject | Demyelinating Disorders | en_US |
dc.subject | Non-Clinical Medicine | en_US |
dc.subject | Health Informatics | en_US |
dc.subject | Science Policy | en_US |
dc.title | Evaluation of an Online Platform for Multiple Sclerosis Research: Patient Description, Validation of Severity Scale, and Exploration of BMI Effects on Disease Course | en_US |
dc.type | Journal Article | en_US |
dc.description.version | Version of Record | en_US |
dc.relation.journal | PLoS ONE | en_US |
dash.depositing.author | Bove, Riley Marie | |
dc.date.available | 2013-05-13T19:03:30Z | |
dc.identifier.doi | 10.1371/journal.pone.0059707 | * |
dash.authorsordered | false | |
dash.contributor.affiliated | Secor, Elizabeth | |
dash.contributor.affiliated | Greeke, Emily Elizabeth | |
dash.contributor.affiliated | Bove, Riley | |
dash.contributor.affiliated | Glanz, Bonnie | |
dash.contributor.affiliated | Healy, Brian | |
dash.contributor.affiliated | De Jager, Philip | |
dash.contributor.affiliated | Weiner, Howard | |
dash.contributor.affiliated | Chitnis, Tanuja | |
dc.identifier.orcid | 0000-0003-0203-9681 | |