Social Impact Study

Please note: 

The Study is now closed and results are posted on this website under Impact Study Results

Multiple Sclerosis is a disease that gets a great deal of scientific attention, but there is a significant lack of understanding about the social disruption a diagnosis of MS has on the person on the receiving end of the diagnosis and their families. Closing this gap in understanding is the primary focus of this study; developing a resource document that reflects the perspectives and viewpoints of the people who are wrestling with MS on a daily basis, their family and friends.

The team that has come together to complete this project are from diverse backgrounds, but they have two things in common. Their lives have been impacted directly or indirectly by MS and they are not members of the scientific or medical communities who quite rightly consider persons afflicted with this disease as cases. In other words, this is a project by persons with MS for persons with MS that is concerned exclusively with the social aspects of this disease.

The final product that comes out of the study will be used to prepare a “User’s Handbook” with practical advice that comes from the people who know the issues best., providing workable data for people searching for information and practical advice on how to live successfully with MS, written in plain language and available in a number of formats, at no cost.

MS is a disease with an incredible number of variations, consequently there is no one approach that will satisfy the needs of everyone in the study. A segmented approach is being applied to ensure that each person need only complete those sections of the survey that directly relate to their personal experiences. This accommodates not only differences in how the disease manifests itself in different people, but it also deals effectively with a disease that changes over a course that can span several decades.

There will be no personal identity information requested or collected other than that person’s e-mail address, which is the only means that will be used to communicate with study participants. While we will not be distributing these e-mail addresses to any third parties we will be using them to communicate from time to time with our volunteer participants.If anyone is uncomfortable using their own e-mail address for this project they are encouraged to acquire a secure e-mail address from one of the large providers such as Hotmail or Yahoo, thereby ensuring anonymity.

Everyone is asked to complete Section 1, General Background Information.There are two streams in this part of the survey,‘A’ for persons with MS (MSrs) and ’B’ for people living with persons with MS. Each person’s information from the Section 1 responses will be used by the researchers to identify those sections that each study participant should be encouraged to complete to provide us with the broadest possible study results.Each person is welcome to make their own decisions with respect to the sections they complete however, thereby ensuring that this is a self-directed study that does not contain any bias introduced by the study team.

Section 1 establishes the fundamental facts about each participant’s interaction with MS,  gathering information about each person’s current life situation to identify particular areas of interest and eliminate those that are not relevant to a specific situation. As an example, a recently diagnosed person with MS who is struggling to maintain life as it was before MS would have little interest in completing the questionnaire dealing with attendant care levels. Section 2 looks at personal relationships, while Employment is the focus of Section 3 and Housing challenges are explored in Section 4.

This project is international in scope, and participants with MS and their families from around the world are invited to take part in this study. Communication should be addressed to socialimpact@msliving.org.The survey results will be available on the MS Living website.

The survey questions are available in plain text format on the Survey Questions page. Simply highlight the sections you want to complete, then copy and paste them into your word processing software. Complete the survey and send it as an attachment or embedded in your email to socialimpact@msliving.org; alternatively you can fax it to 905 373 7244 or mail it to Social Impact Study, 405 - 120 University Avenue E, Cobourg ON Canada K9A 0A9.

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