Methodology of an international study of people with multiple sclerosis recruited through web 2.0 platforms: Demographics, lifestyle, and disease characteristics

Abstract

Background. Despite evidence of the potential importance of the role of health and lifestyle behaviours in multiple sclerosis (MS) outcomes, there has not been a significant focus on this area of research. Aim. We aimed to recruit an international sample of people with MS at baseline and over a five-year timeframe, examine their health and lifestyle behaviours, and determine the relationship of these behaviours to self-reported disability, disease activity, and quality of life. Methods. People with MS were recruited through web 2.0 platforms including interactive websites, social media, blogs, and forums and completed a comprehensive, multifaceted online questionnaire incorporating validated and researcher-derived tools. Results. 2519 participants met inclusion criteria for this study. This paper describes the study methodology in detail and provides an overview of baseline participant demographics, clinical characteristics, summary outcome variables, and health and lifestyle behaviours. The sample described is unique due to the nature of recruitment through online media and due to the engagement of the group, which appears to be well informed and proactive in lifestyle modification. Conclusion. This sample provides a sound platform to undertake novel exploratory analyses of the association between a variety of lifestyle factors and MS outcomes. © 2013 Emily J. Hadgkiss et al.