Trust, Information Appraisal, and Health Communication Behaviours Among People Living with Multiple Sclerosis

Background: People living with multiple sclerosis (MS) are increasingly turning to the Internet for information about their condition and its treatment. However, online health information varies widely in quality, and patients often lack the eHealth literacy needed to distinguish reliable from unreliable sources. Objective: This study examined how people with MS in the United Kingdom seek, evaluate, and judge the quality of online health information, with particular attention to information about medicines, and explored the features that they would value in a curated, quality-assessed information resource. Methods: A cross-sectional online survey was distributed via the MS Trust to adults with MS or their carers in the United Kingdom. The 55-item instrument, adapted from a previously validated questionnaire, captured demographic characteristics, Internet use, eHealth confidence, perceived quality indicators, assessment difficulties, and preferences for a curated information resource. Descriptive statistics summarised the sample, and Spearman's rank-order correlation tested associations between confidence, perceived importance of quality, and information-checking behaviours. Results: One hundred and fifty-two participants completed the survey. Because the number of individuals reached through the MS Trust's distribution channels was not recorded, a true response rate could not be calculated; the achieved sample represented approximately 38-40% of the a priori target of 400. Almost all participants (99%) used the Internet to find MS-related information, and 84% sought information about their medicines online. Recommendation by a healthcare professional was the strongest indicator of perceived information quality (17.8%), and MS specialists were the most trusted source overall (32.9%). However, 54.4% of participants expressed concerns about online information quality, and only 47.9% believed that search engines reliably returned high-quality websites. Confidence in evaluating online medicine information correlated strongly and positively with the perceived importance of information quality (ρ = 0.869, p < 0.001, n = 73) and with active checking behaviour (ρ = 0.677, p < 0.001, n = 73). Eighty-eight percent of participants endorsed the development of a single, quality-assessed website for MS-related medicine information, and 80% wished for visible details of how each source had been assessed. Conclusions: Despite high engagement with online information, people with MS remain uncertain about its quality and find independent assessment time-consuming and complex. A curated, transparently assessed information resource, ideally with clinician endorsement and visible quality indicators, was endorsed by the subset of participants who reached these items and represents a candidate direction for future digital health interventions in MS care. Because several preference items were answered by small subgroups (n = 35-79) drawn from an engaged charity membership, these findings are exploratory and require confirmation in more representative samples.