Getting on with Your life with MS: Development, refinement and preliminary testing of a self-management workbook for people living with multiple sclerosis

Multiple sclerosis (MS), an auto-immune disease of the central nervous system, is the leading cause of neurological disability among young adults in Canada. The effect of MS is profound and is similar for people across nations, socioeconomic gradients, levels of education, and occupations. Its presentation varies widely from person to person, with symptoms ranging from mild sensory alterations to severe disability limiting activity and restricting participation in life's roles. These manifestations of MS have a direct impact on quality of life (QOL). The main priorities of people with MS are to remain independent and empowered to participate in their communities and their care. In order to maintain their QOL as high as possible, people with MS recognize the importance of maintaining a healthy life style, yet research shows that few are sufficiently physically active to maintain health in the face of a progressive disease. This indicates a gap between information (knowledge) and action, a gap that needs to be filled. To bridge that gap and address the wide range of topics important to people with MS, a knowledge tool based on principles of self-management was developed. Self-management is a lifetime task where patients are coached to maintain wellness in their foreground perspective, rather than illness, through development of five core skills: problem solving, decision making, resource utilization, forming patient/health care provider partnership, taking action. To put those skills to use, a person needs to gain the ability to self-assess, identify and implement strategies to improve, and monitor progress. The first aim of this thesis was to develop a workbook for people living with MS entitled Getting On With Your Life With MS: A Guide To Taking Charge Of Your Health (GETONMS©) following the principles and skills of self-management and optimize its functionality. The development and optimization of GETONMS© is presented in Manuscript 1 along with a 10-stage process that would allow others to use this methodology to develop and refine self-management educational material for other patient populations. GETONMS©, presented in Chapter 5, is a workbook that covers 43 topics identified as important for the quality of life of people with MS. Clinicians and researchers who evaluated the workbook have approved of the content and format and showed interest in offering the final product to their patients. Preliminary evaluation showed that the content and format fit the needs of the users and little or no support is needed to use the workbook.The next objective of this thesis was to gain insight into the processes through which engagement with the workbook produces change in QOL. Manuscript 2 explored how people with MS valued GETONMS© as well as the potential of GETONMS© to produce a response shift in QOL over a 2 month period. The information gathered from the analysis of values and changes in QOL in the form of response shift helped design a feasibility study to be conducted on the internet in order to make the workbook accessible to as many as possible.Manuscript 3 presents the protocol for the randomized feasibility study as well as data from the first 23 subjects recruited to identify strengths and limitations of using social media to enroll people with MS into an internet-based study of self-management. This interim analysis was conducted to allow for modifications to the protocol to be made if needed. It showed that social media recruitment strategy reached a patient population similar to the traditional in-person recruitment sample but also recruited participants into the study over twice as fast. The three manuscripts and the GETONMS© self-management workbook presented in this thesis provide evidence towards global self-management research, social media recruitment, and will allow for the design of a main trial evaluating GETONMS©. It also produced a workbook that will be made available to people with MS soon.

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