Methodology of an International Study of People with Multiple Sclerosis Recruited through Web 2.0 Platforms: Demographics, Lifestyle, and Disease Characteristics
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. 1. Introduction Multiple sclerosis (MS) is a chronic, debilitating neurological condition that affects an estimated two million people worldwide. Despite decades of research, the aetiology of MS and factors that affect disease progression and relapse rate are still debated [1]. Symptoms of the disease are heterogeneous, and the current goal of therapeutic intervention is to slow the progression of disability and provide symptomatic relief. Several large national MS registries collect longitudinal data on patient outcomes and measure the effectiveness of a range of therapies [2]. Epidemiological studies that utilise these data are a cost-effective way of exploring associations between factors that influence relapse rate or disease progression. There is a comprehensive body of the literature supporting a relationship between lifestyle and psychosocial factors, and MS health outcomes [3–8]. Despite this expanding body of research, little is known about the degree to which beneficial lifestyle modification is adopted by the international MS community and whether this has a positive impact on health outcomes. To our knowledge, none of these registries collect comprehensive data on lifestyle factors. We aimed to
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