Web-Based Health Information Seeking by People Living With Multiple Sclerosis: Qualitative Investigation of the Multiple Sclerosis Online Course.

BACKGROUND: Digital technologies have afforded people living with multiple sclerosis (MS) access to telehealth consultations, diagnostic tools, and monitoring. Although health care professionals remain the most trusted source of information, the internet has emerged as a valuable resource for providing MS-related information, particularly during the COVID-19 pandemic. Notably, people living with MS are increasingly seeking educational content for a range of topics related to the self-management of MS; however, web-based information seeking remains largely underevaluated. To address this gap and ensure that web-based health-related information is accessible and engaging, this study used qualitative methods to analyze the reflections from participants of web-based educational programs for people living with MS. OBJECTIVE: This study aimed to explore the motivations, behaviors, and expectations of web-based health information seeking for people living with MS. METHODS: We conducted semistructured interviews for 38 people living with MS 1 month after they completed the novel MS Online Course, which provided information on modifiable lifestyle-related risk factors for people living with MS. Of the 38 participants, 22 (58%) completed the intervention course and 16 (42%) completed the standard care course. Inductive thematic analysis was used within a qualitative paradigm, and 2 authors coded each interview separately and arrived at themes with consensus. RESULTS: We identified 2 themes: motivation to learn and MS information on the web. The diagnosis of MS was described as a pivotal moment for precipitating web-based information seeking. People living with MS sought lifestyle-related information to facilitate self-management and increase control of their MS. Although social media sites and MS websites were considered useful for providing both support and information, discretion was needed to critically appraise information. Recognizable institutions were frequently accessed because of their trustworthiness. CONCLUSIONS: This study provided novel insights into the motivations of people living with MS for seeking web-based health information. Furthermore, their preferences for the content and format of the web-based information accessed and their experiences and reactions to this information were explored. These findings may guide educators, researchers, and clinicians involved in MS care to optimize the engagement and processing of web-based health information seeking by people living with MS.

Study protocol for an online lifestyle modification education course for people living with multiple sclerosis: the multiple sclerosis online course (MSOC).

BACKGROUND: People living with multiple sclerosis (plwMS) seek access to information on evidence-based lifestyle-related risk factors associated with multiple sclerosis (MS). As the internet has made delivery of lifestyle information increasingly accessible and cost-effective, we designed the Multiple Sclerosis Online Course (MSOC) to deliver a multimodal lifestyle modification program for plwMS. Two MS online courses were developed: the intervention course based on lifestyle recommendations of the Overcoming Multiple Sclerosis (OMS) program and the standard-care course representing standard lifestyle recommendations from other MS websites. We examined for feasibility in a pilot randomised controlled trial (RCT), where satisfactory completion and accessibility were achieved across both study arms. From this success, a protocol for a larger RCT was developed to examine the effectiveness of MSOC in improving health-related quality of life (HRQoL) and other health outcomes in plwMS. METHODS/DESIGN: This single-blinded RCT will recruit n = 1,054 plwMS. Participants in the intervention arm will receive access to a MSOC with seven modules providing evidence-based information on the OMS program. Participants in the control group will receive access to a MSOC of identical format, with seven modules providing general MS-related information and lifestyle recommendations sourced from popular MS websites, e.g. MS societies. Participants will complete questionnaires at baseline and at 6, 12, and 30 months after course completion. The primary endpoint is HRQoL, as measured by MSQOL-54 (both physical and mental health domains) at 12 months following course completion. Secondary outcomes are changes to depression, anxiety, fatigue, disability, and self-efficacy as measured by Hospital Anxiety and Depression Scale, Patient-Determined Disease Steps and University of Washington Self-Efficacy Scale, respectively, assessed at each timepoint. Further assessments will include quantitative post-course evaluation, adoption and maintenance of behaviour change from follow-up survey data, and qualitative analysis of participants' outcomes and reasons for course completion or non-completion. DISCUSSION: This RCT aims to determine whether an online intervention course delivering evidence-based lifestyle modification recommendations based on the Overcoming Multiple Sclerosis program to plwMS is more effective at improving HRQoL, and other health outcomes post-intervention, compared with an online standard-care course. TRIAL REGISTRATION: This trial was registered prospectively with the Australian New Zealand Clinical Trials Registry, www.anzctr.org.au , identifier ACTRN12621001605886. DATE OF REGISTRATION: 25 November 2021.

Stressful life events and depression and fatigue in people with multiple sclerosis: a cross-sectional analysis of an international cohort.

BACKGROUND: Relationships between stressful life events (SLEs) and health outcomes in people living with multiple sclerosis (plwMS), beyond relapse, are not well-established. We examined associations between SLEs and fatigue and symptoms of depression in plwMS. METHODS: 948 participants were queried whether they had experienced any of the 16 SLEs (Holmes-Rahe Social Readjustment Rating Scale) in the preceding 12 months. SLEs were summated to estimate SLE number and SLE load (weighted for the degree of associated stress). Cross-sectional associations between SLE (number, load and individual) and fatigue, and depressive symptoms were examined using log-binomial or log-multinomial regression adjusted for age, sex, relapse symptoms, education, MS type at baseline, disability, fatigue, comorbidity, depression, and antidepressant/antifatigue medications, as appropriate. Sub-analyses restricted to SLEs with a negative emotional impact were performed. RESULTS: Median SLE number and load were 2 (IQR 1-2) and 57 (IQR 28-97), respectively. SLE number and load were not associated with a higher prevalence of fatigue, or depressive symptoms, even when restricting analyses to SLEs with a perceived negative emotional impact. A new relationship or family member with a negative impact was associated with a threefold and 2.5-fold higher prevalence of depressive symptoms, respectively. Serious illness was associated with a 28% higher prevalence of depressive symptoms. CONCLUSION: Psychological support for SLEs, and/or intervention targeted to SLE appraisal, may be beneficial in mitigating the adverse effects of SLEs with a perceived negative emotional impact on depressive symptoms in plwMS. Potential associations between serious illness and increased prevalence of depressive symptoms may warrant further investigation.

The association between tobacco smoking and depression and anxiety in people with multiple sclerosis: A systematic review.

BACKGROUND: The link between tobacco smoking and Multiple Sclerosis (MS) onset and progression is well-established. While clinical levels of depression and anxiety are highly prevalent in people living with MS (plwMS), and both are recognized as common MS-related symptoms, the relationships between smoking behavior and depression and anxiety are unclear. This systematic review aimed to synthesize evidence on the relationships between current-smoking and former-smoking and depression and anxiety in plwMS. METHODS: Systematic review of all studies investigating associations between tobacco smoking and depression and anxiety in plwMS was conducted. Relevant studies published before 26 April 2022 were identified by searching seven databases; MEDLINE® (Ovid and PubMed), Embase, CINAHL®, Cochrane Library and PsycInfo), and citation and reference list checking. Joanna Briggs Institute Critical Appraisal Checklists for respective study designs assessed the risk of bias. RESULTS: Thirteen publications reporting on 12 studies met study inclusion criteria. Nine of 12 studies examining current-smoking and depression in plwMS identified a positive association. Four prospective studies provided evidence supporting a causal smoking-depression relationship, with 1.3-2.3-fold higher depression prevalence found in current-smokers than non-smokers. Three cross-sectional studies found no smoking-depression association. Four of five included studies found current-smoking was associated with anxiety, with three prospective studies indicating anxiety prevalence was around 20% higher in current-smokers. Former-smoking was associated with increased prevalence of depression, but not anxiety. CONCLUSION: We provide strong evidence for increased depression prevalence in plwMS who are either current-smokers or former-smokers. However, only current-smoking was associated with increased prevalence of anxiety.