Evaluation of an Online Platform for Multiple Sclerosis Research: Patient Description, Validation of Severity Scale, and Exploration of BMI Effects on Disease Course

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. First, we compared the demographic characteristics of...

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Vydáno v:PloS one Ročník 8; číslo 3; s. e59707
Hlavní autoři: Bove, Riley, Secor, Elizabeth, Healy, Brian C., Musallam, Alexander, Vaughan, Timothy, Glanz, Bonnie I., Greeke, Emily, Weiner, Howard L., Chitnis, Tanuja, Wicks, Paul, De Jager, Philip L.
Médium: Journal Article
Jazyk:angličtina
Vydáno: United States Public Library of Science 20.03.2013
Public Library of Science (PLoS)
Témata:
Age
Autoimmune diseases
Biology
Body mass
Body Mass Index
Body size
Computer Science
Correlation
Data collection
Demographics
Demography
Epidemiologic Research Design
Genomics
Hospitals
Humans
Internet
Medical research
Medical schools
Medicine
Multiple sclerosis
Multiple Sclerosis - physiopathology
Neurology
Neurosciences
Obesity
Patients
Science Policy
Severity of Illness Index
Software
Studies
Validity
Vitamin deficiency
Walking
Walking - physiology
Womens health
United States > US
Massachusetts
ISSN:1932-6203, 1932-6203
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Shrnutí: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. 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. 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. 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.
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Intellectual contributions: BG TC. Conceived and designed the experiments: RB TV PW PLD. Performed the experiments: RB EG. Analyzed the data: ES BCH AM. Contributed reagents/materials/analysis tools: HW. Wrote the paper: RB PLD.
Competing Interests: Dr. Vaughan and Dr. Wicks are employed by PatientsLikeMe, Inc. Dr.s Vaughan and Wicks hold stock options in the company. The PatientsLikeMe R&D team has received research support from Abbott, Accorda, Avanir, Biogen, Merck, Novartis, Sanofi, and UCB. PatientsLikeMe provided no financial support to the investigative team from Brigham & Women’s Hospital. Dr. Bove and MS Secor report no disclosures. Dr. Healy, Dr. Glanz and Ms. Greeke have received research support from Merck Serono. Dr. Weiner has served as a consultant for Biogen-Idec, EMD Serono, Genentech, GSK, Nasvax, Novartis, and Teva Neurosicences. Dr. Chitnis has served as a consultant for Biogen-Idec, Sanofi Aventis, Novartis, EMDSerono, and Teva Neurosciences, and has received grant support from Merck-Serono for unrelated activities. Dr. De Jager has received research support and speaker honoraria from Biogen-Idec and consultation fees from Teva. He has received research support from Biogen-IDEC, GlaxoSmithKline, and Sanofi-Aventis. There are no patents, products in development or marketed products to declare. This does not alter the authors' adherence to all the PLOS ONE policies on sharing data and materials.
ISSN:1932-6203
1932-6203
DOI:10.1371/journal.pone.0059707