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

Bove, Riley; Secor, Elizabeth; Healy, Brian C.; Musallam, Alexander; Vaughan, Timothy E.; Glanz, Bonnie I.; Greeke, Emily; Weiner, Howard L.; Chitnis, Tanuja; Wicks, Paul; Jager, Philip L. De

doi:10.1371/journal.pone.0059707

Cited by 68 publications

(64 citation statements)

References 40 publications

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“…On the other hand there is increasing evidence that this kind of "uncontrolled" data may have a similar quality and may be used for research as those generated in "classical" studies. (Bove et al 2013). We do not see a clear expected direction for a bias in the transition phase.…”

Section: Discussioncontrasting

confidence: 61%

Overload injuries in barefoot/minimal footwear running: evidence from crowd sourcing

Däumer

Kleinmond²,

Stolle

et al. 2014

Preprint

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Background: The incidence of injuries in minimal footwear or barefoot runners compared to runners using conventional running shoes is still being discussed. Methods: We focus here on methods and results of a online survey in a community of minimal footwear/barefoot (MF/B) runners. The aim of the survey was to investigate the viability of the method and to record first insights on running behavior, distance performance and injuries. Results: In total 226 runners answered the questionnaire, 15 subjects had to be removed due to invalid data. A total of 211 (94%) subjects (152 male, ages 15-71 years [mean=40]) were included in the analysis. The risk to suffer a running related injury was significantly increased during the time period of changing from shod running to MF/B running (see Table 2). The injury rate per km was markedly lower -about one half -in MF/B than in shod running, but threefold higher during the transition period. Disucssion/Conclusion: Future research into the right "dosage" of barefoot/minimal footwear running in the transition period is warranted. We speculate that special adaptations -which may take years and thousands of kilometers to become effectiveof the neuromuscular control play a major role, very similar to the thousands of hours a person needs to play and practice playing the piano before becoming a musician.

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Section: Discussioncontrasting

confidence: 61%

Overload injuries in barefoot/minimal footwear running: evidence from crowd sourcing

Däumer

Kleinmond²,

Stolle

et al. 2014

Preprint

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“…The MSRS is an instrument that measures functional disability in MS and includes seven items that assess walking, upper limb function, vision, speech, swallowing, thinking/memory/cognition, sensation/burning/pain (Appendix). The properties of the instrument have been validated and published elsewhere [27]. For analyses, we used data from participants that reported MSRS within 30 days of the baseline assessment.…”

Section: Methodsmentioning

confidence: 99%

Free-Living Physical Activity Monitoring in Adult US Patients with Multiple Sclerosis Using a Consumer Wearable Device

et al. 2018

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Introduction: Wearable devices have been used to characterize physical activity in multiple sclerosis (MS). The objectives of this study were to advance the literature on the utility of free-living physical activity tracking from secondary analyses of a pilot study in MS patients. Method: The original observational study was conducted in participants with MS at PatientsLikeMe (www.PatientsLikeMe.com), an online network of patients with chronic diseases. Participants completed a baseline self-assessment, and received a Fitbit One^TM wearable device with instructions to upload data. Eligible participants (1) self-reported MS, (2) logged on to the PatientsLikeMe website 90 days prior to enrollment, and (3) consented to participate electronically. Participants (1) < 18 years, (2) living outside the United States, and (3) requiring wheelchair assistance for most daily activities were excluded. The secondary analyses were limited to participants with complete data on MS type, disease duration, and Multiple Sclerosis Rating Scale (MSRS) and at least 7 days of wearable data. Step count was used as a measure of physical activity. Results: The analysis cohort of 114 participants uploaded a mean of 20.1 days of wearable data over the 23-day study (87% adherence); participants averaged 4,393 steps per day. The mean age of participants was 52 years, predominantly female (75%), relapsing-remitting type (79%), with mean disease duration of 16 years. Mean MSRS score within 30-day of baseline was 32; 72% reported mild-moderate walking disability. The reliability of step count measured by intraclass correlation was 0.55 for a single day, ≥0.7 for 2-day average, and ≥0.9 for 7-day average. After controlling for covariates, self-reported disease severity (MSRS quartile) was an independent predictor of step count (p < 0.001). Least square means (LS means) for participants that were least disabled (lowest quartile) was 5,937 steps, which was significantly higher than participants in the second, third, and fourth quartiles (4,570, 3,490, and 3,272, respectively). Similarly, LS means of participants with no ambulatory disability (measured by MSRS walk component) was 6,931 steps, significantly higher than participants with greater disability (4,743, 4,394, 2,727 steps for symptomatic, mild, and moderate disability, respectively, p < 0.001). Discussion: Using an interactive platform, this study captured free-living mobility data in MS patients. Important metrics such as the use of a minimum of 2-day estimates and self-reported disability were found to be robust indicators and correlates, respectively, of participant activity levels. Further triangulation of such metrics may reduce the burden on patients, clinicians, and researchers when monitoring clinical status.

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“…One study showed that families dealing with rare diseases are active in social media communities, 10 and a few reports demonstrate the use of social media to recruit subjects for broad population-based studies, studies of more common diseases, or small studies of less common diseases. [11][12][13][14] To our knowledge, only 1 study has reported using primarily social media in a prospective study of a very rare disease: an online support group of 12 individuals was accessed to obtain consent for a study of spontaneous coronary artery dissection. 15 By contrast, our study demonstrates the feasibility of using social media to reach a significantly larger number of participants via multiple online communities using only online resources.…”

Section: Lessons Learned and Future Possibilitiesmentioning

confidence: 99%

Social Media Methods for Studying Rare Diseases

Stringer²,

et al. 2014

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For pediatric rare diseases, the number of patients available to support traditional research methods is often inadequate. However, patients who have similar diseases cluster "virtually" online via social media. This study aimed to (1) determine whether patients who have the rare diseases Fontan-associated protein losing enteropathy (PLE) and plastic bronchitis (PB) would participate in online research, and (2) explore response patterns to examine social media' s role in participation compared with other referral modalities. A novel, internetbased survey querying details of potential pathogenesis, course, and treatment of PLE and PB was created. The study was available online via web and Facebook portals for 1 year. Apart from 2 study-initiated posts on patient-run Facebook pages at the study initiation, all recruitment was driven by study respondents only. Response patterns and referral sources were tracked. A total of 671 respondents with a Fontan palliation completed a valid survey, including 76 who had PLE and 46 who had PB. Responses over time demonstrated periodic, marked increases as new online populations of Fontan patients were reached. Of the responses, 574 (86%) were from the United States and 97 (14%) were international. The leading referral sources were Facebook, internet forums, and traditional websites. Overall, social media outlets referred 84% of all responses, making it the dominant modality for recruiting the largest reported contemporary cohort of Fontan patients and patients who have PLE and PB. The methodology and response patterns from this study can be used to design research applications for other rare diseases. Pediatrics 2014;133:e1345-e1353 AUTHORS:

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

Cited by 68 publications

References 40 publications

Overload injuries in barefoot/minimal footwear running: evidence from crowd sourcing

Overload injuries in barefoot/minimal footwear running: evidence from crowd sourcing

Free-Living Physical Activity Monitoring in Adult US Patients with Multiple Sclerosis Using a Consumer Wearable Device

Social Media Methods for Studying Rare Diseases

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