For all those people with MS who contributed their valuable time and information last year when asked on various websites and social media pages to complete our HOLISM (Health Outcomes and Lifestyle Interventions in a Sample of people with Multiple Sclerosis) survey online, and are wondering what happened to the study, we have been working away in the background with a team of analysts and statisticians, analysing the data and interpreting the findings.
Our first paper from the study has just been published in the neurology journal Neurology Research International. This paper outlines in detail the complex methodology of the study and the overall description of the study instruments and participants.
What does it say?
Key findings are that we recruited 2,519 PwMS who completed our survey, over 80% women, from 57 different countries; they were a highly educated group, as one might expect for people using websites and social media to improve their health. The majority (61%) had relapsing-remitting MS.
There were a number of other findings of interest related to quality of life, disability and depression, but the importance of this paper is that is reports in detail how the study was done prior to a series of studies on the collected data examining the relationship between various lifestyle factors such as diet, omega 3 supplementation, exercise, meditation, smoking, and so on, and relapse rate, disease activity and disability.
That is, we will be reporting over the next 12 months in the neurology journals the factors that affect disease activity and disability for PwMS in this large sample of people from all over the world.
The potential of this study is enormous, and we thank those of you who contributed data, and of course the Bloom Foundation for funding the study. We hope this paper is of interest, but suggest that the papers to come will be of even greater interest and influence.
► Hadgkiss EJ, Jelinek GA, Weiland TJ, Pereira N, Marck CH, van der Meer DM. Methodology of an international study of people with multiple sclerosis recruited through web 2.0 platforms: demographics, lifestyle and disease characteristics. Neurol Res Int 2013; Article ID 580596, 12 pages, doi:10.1155/2013/580596 View pdf