Feasibility trial of a multiple sclerosis lifestyle educational online course: qualitative analysis of participants' motivations, expectations and experiences (Preprint)
Bibliographic record
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 CLINICALTRIAL This study was prospectively registered with the Australian New Zealand Clinical Trials Registry (ID: ACTRN12621000245897).
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.038 | 0.056 |
| Meta-epidemiology (narrow) | 0.000 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.004 | 0.004 |
| Scholarly communication | 0.003 | 0.003 |
| Open science | 0.002 | 0.004 |
| Research integrity | 0.001 | 0.002 |
| Insufficient payload (model declined to judge) | 0.006 | 0.001 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".