JMIR Publications

ABSTRACT

Background:

Modification of lifestyle-related risk factors for multiple sclerosis (MS) has been associated with improved health outcomes when compared with standard medical management alone. Based on an existing evidence-based lifestyle education program offered as a residential workshop, the MS Online Course (MSOC) was developed to translate the face-to-face program into an online educational intervention. We performed a preliminary small randomised controlled trial (RCT), to quantitatively and qualitatively assess the feasibility of the MSOC. This paper reports qualitative aspects of participant involvement in this preliminary study.

Objective:

As part of an assessment of feasibility, to explore participants’ motivations, expectations, and experiences of the MSOC.

Methods:

MSOC trial participants were recruited via online advertisements through MS society websites of Canada, New Zealand, and the United States, and an Australian MS Facebook group. Consenting participants were randomised to one of two arms: the MSOC standard care course, containing material relating to MS and lifestyle sourced from public facing MS websites; or the MSOC intervention course, based on a face-to-face lifestyle modification program. Following completion of the respective courses, participants were invited to undertake semi-structured interviews. Reflexive thematic analysis of interviews was performed to identify themes related to participants’ motivations, expectations, and experiences of the MSOC.

Results:

Of 31 eligible participants, 17 people completed the MSOC feasibility RCT and 14 agreed to be interviewed. Four themes were identified: 1) “Wanting to help others” (helping through volunteering, contributing to knowledge base and spreading the word; 2) “Obtaining knowledge to help better manage MS” (reassurance and confirmation of existing knowledge; new credible knowledge and evidence); 3) “Doing whatever I can to help myself” (understanding lifestyle modification, changing my lifestyle, and remaining well and high-functioning); and 4) “Developing new attitudes” (finding positivity and feeling more confident and in control).

Conclusions:

Participants were motivated to undertake the MSOC to help others with MS through participation in research, to help themselves by improving their knowledge and to find ways in which they could manage their own MS. Expectations included the obtaining of credible, reliable information to substantiate their existing knowledge, and to further understand lifestyle modification. Participants’ experiences varied from experiencing little to no impact, to confirming existing knowledge, obtaining new knowledge, and early implementation of new or modified lifestyle behaviours. Although not identified as an expectation prior to undertaking the MSOC, some participants experienced improved positivity, confidence, and a greater sense of control. These insights surrounding participants’ motivations, expectations and experiences may assist in recruitment strategies, course redevelopment and outcome measures for future studies. Identification of participants’ changing attitudes, which they considered a high priority in their lives, suggests outcome measures should include measures of confidence and agency Clinical Trial: This study was prospectively registered with the Australian New Zealand Clinical Trials Registry (ID: ACTRN12621000245897).