The quality of life impact of the COVID-19 pandemic and lockdowns for people living with multiple sclerosis (MS): evidence from the Australian MS Longitudinal Study.

PURPOSE: People living with multiple sclerosis (PwMS) in metropolitan Victoria, Australia, experienced a 112-day, COVID-19-related lockdown in mid-2020. Contemporaneously, Australian PwMS elsewhere experienced minimal restrictions, resulting in a natural experiment. This study investigated the relationships between lockdowns, COVID-19-related adversity, and health-related quality of life (HRQoL). It also generated health state utilities (HSU) representative of changes in HRQoL. METHODS: Data were extracted from Australian MS Longitudinal Study surveys, which included the Assessment of Quality of Life-Eight Dimensions (AQoL-8D) instrument and a COVID-19 questionnaire. This COVID-19 questionnaire required participants to rank their COVID-19-related adversity across seven health dimensions. Ordered probits were used to identify variables contributing to adversity. Linear and logit regressions were applied to determine the impact of adversity on HRQoL, defined using AQoL-8D HSUs. Qualitative data were examined thematically. RESULTS: N = 1666 PwMS (average age 58.5; 79.8% female; consistent with the clinical presentation of MS) entered the study, with n = 367 (22.0%) exposed to the 112-day lockdown. Lockdown exposure and disability severity were strongly associated with higher adversity rankings (p < 0.01). Higher adversity rankings were associated with lower HSUs. Participants reporting major adversity, across measured health dimensions, had a mean HSU 0.161 (p < 0.01) lower than participants reporting no adversity and were more likely (OR: 2.716, p < 0.01) to report a clinically significant HSU reduction. Themes in qualitative data supported quantitative findings. CONCLUSIONS: We found that COVID-19-related adversity reduced the HRQoL of PwMS. Our HSU estimates can be used in health economic models to evaluate lockdown cost-effectiveness for people with complex and chronic (mainly neurological) diseases.

Self-reported behaviour change among multiple sclerosis community members and interested laypeople 6 months following participation in a free online course about multiple sclerosis.

ISSUE ADDRESSED: Evaluated the impact of the Understanding Multiple Sclerosis (MS) massive open online course, which was intended to increase understanding and awareness about MS, on self-reported health behaviour change 6 months after course completion. METHODS: Observational cohort study evaluating precourse(baseline) and postcourse (immediately postcourse and six-month follow-up) survey data. The main study outcomes were self-reported health behaviour change; change type; and measurable improvement. We also collected participant characteristic data (eg, age, physical activity). We compared participants who reported health behaviour change at follow-up to those who did not and compared those who improved to those who did not using χ2 and t tests. Participant characteristics, change types and change improvement were described descriptively. Consistency between changes reported immediately postcourse and at the 6-month follow-up was assessed using χ2 tests and textual analysis. RESULTS: N = 303 course completers were included in this study. The study cohort included MS community members (eg, people with MS, healthcare providers) and nonmembers. N = 127 (41.9%) reported behaviour change in ≥1 area at follow-up. Of these, 90 (70.9%) reported a measured change, and of these, 57 (63.3%) showed improvement. The most reported change types were knowledge, exercise/physical activity and diet. N = 81 (63.8% of those reporting a change) reported a change in both immediately and 6 months after course completion, with 72.0% of those that described both changes giving similar responses each time. CONCLUSION: Understanding MS encourages health behaviour change among course completers up to 6 months after course completion. SO WHAT?: An online education intervention can effectively encourage health behaviour change over a 6-month follow-up period, suggesting a transition from acute change to maintenance. The primary mechanisms underpinning this effect are information provision, including both scientific evidence and lived experience, and goal-setting activities and discussions.

Changes in employment status over time in multiple sclerosis following a first episode of central nervous system demyelination, a Markov multistate model study.

BACKGROUND AND PURPOSE: Understanding predictors of changes in employment status among people living with multiple sclerosis (MS) can assist health care providers to develop appropriate work retention/rehabilitation programs. We aimed to model longitudinal transitions of employment status in MS and estimate the probabilities of retaining employment status or losing or gaining employment over time in individuals with a first clinical diagnosis of central nervous system demyelination (FCD). METHODS: This prospective cohort study comprised adults (aged 18-59 years) diagnosed with FCD (n = 237) who were followed for more than 11 years. At each review, participants were assigned to one of three states: unemployed, part-time, or full-time employed. A Markov multistate model was used to examine the rate of state-to-state transitions. RESULTS: At the time of FCD, participants with full-time employment had an 89% chance of being in the same state over a 1-year period, but this decreased to 42% over the 10-year follow-up period. For unemployed participants, there was a 92% likelihood of remaining unemployed after 1 year, but this probability decreased to 53% over 10 years. Females, those who progressed to clinically definite MS, those with a higher relapse count, and those with a greater level of disability were at increased risk of transitioning to a deteriorated employment state. In addition, those who experienced clinically significant fatigue over the follow-up period were less likely to gain employment after being unemployed. CONCLUSIONS: In our FCD cohort, we found a considerable rate of employment transition during the early years post-diagnosis. Over more than a decade of follow-up post-FCD, we found that females and individuals with a greater disability and a higher relapse count are at higher risk of losing employment.

Using qualitative free-text data to investigate the lived experience of the COVID-19 pandemic for a large cohort of Australians with different multiple sclerosis related disability levels.

BACKGROUND: No large-scale qualitative studies have investigated the lived experience of people living with multiple sclerosis (PwMS) during the pandemic according to their disability level. We used qualitative research methods to investigate the lived experience of a large cohort of Australians living with differing multiple sclerosis (MS)-related disability levels during the COVID-19 pandemic. We also provided useful contextualisation to existing quantitative work. METHODS: This was a retrospective survey-based mixed-methods cohort study. A quality-of-life study was conducted within the Australian MS Longitudinal Study during the pandemic. Disability severity was calculated using the Patient Determined Disease Steps. Qualitative free-text data regarding COVID-19 impacts was collected/analysed for word frequency and also thematically (inductively/deductively using sophisticated grounded theory) using NVivo software. We also triangulated word frequency with emerging themes. RESULTS: N=509 PwMS participated providing n=22 530 words of COVID-19-specific data. Disability severity could be calculated for n=501 PwMS. The word 'working' was important for PwMS with no disability, and 'support' and 'isolation' for higher disability levels. For PwMS with milder disability, thematic analysis established that multitasking increased stress levels, particularly if working from home (WFH) and home-schooling children. If not multitasking, WFH was beneficial for managing fatigue. PwMS with severe disability raised increased social isolation as a concern including prepandemic isolation. CONCLUSIONS: We found negative impacts of multitasking and social isolation for PwMS during the pandemic. WFH was identified as beneficial for some. We recommend targeted resourcing decisions for PwMS in future pandemics including child-care relief and interventions to reduce social isolation and suggest that these could be incorporated into some form of advanced care planning. As the nature of work changes postpandemic, we also recommend a detailed investigation of WFH for PwMS including providing tailored employment assistance.

Confidence communicating about multiple sclerosis among enrolees in an online course.

BACKGROUND: Effective communication is essential for multiple sclerosis (MS) disease management. Improving communication about MS may improve healthcare and service quality. OBJECTIVE: To evaluate confidence in communicating about MS in a cohort of MS community members and to assess the impact of participation in the Understanding MS massive open online course (MOOC) on communication confidence. The Understanding MS MOOC is a freely available six-week online course that covers a range of topics related to MS, including its underlying pathology, symptoms, risk factors, and management. METHODS: We assessed communication confidence among Understanding MS MOOC enrolees (N = 905) at three timepoints: prior to their participation in the course, immediately following course completion, and six months following course completion. Communication confidence was quantified using 5-point Likert scale questions. We identified factors that were associated with communication confidence using chi square and t-tests. Among course completers who also completed all three study surveys (N = 88), we assessed the impact of course participation using paired t-tests and we assessed effect size using Cohen's D. We assessed the relationship between changes in primary and secondary outcomes (i.e., MS-related knowledge, health literacy, quality of life, perceived healthcare quality, and self-efficacy) using Pearson correlation. RESULTS: We found that at baseline, communication confidence was positively associated with MS knowledge, health literacy and quality of life. We also found that men and people with MS were more likely to report being confident. Among study participants who completed the course and all three study surveys, we found that course participation improved communication confidence and that this improvement was maintained at the six-month follow-up. The improvement in communication confidence was positively correlated with changes in MS knowledge and health literacy. CONCLUSION: Confidence in communicating about MS is associated with MS knowledge and health literacy. By improving MS knowledge and health literacy, online educational interventions such as the Understanding MS MOOC can improve communication confidence in the MS community.

Healthcare utilization and satisfaction among enrolees in an online course about multiple sclerosis: A cross-sectional study.

BACKGROUND: Healthcare utilization and satisfaction are important for health outcomes among people living with multiple sclerosis (PwMS). However, there is little current evidence around healthcare utilization among PwMS, and less comparing PwMS to those not living with MS. OBJECTIVE: To evaluate healthcare utilization and satisfaction among Understanding MS online course enrolees and to identify factors associated with healthcare satisfaction. METHOD: In this international cross-sectional study, we evaluated participant characteristics (including health literacy and quality of life), healthcare utilization (number of visits, number of provider types), and satisfaction with healthcare (perceived healthcare sufficiency, quality, accessibility) among enrolees in the Understanding MS online course (N = 1068). We evaluated study outcomes using summary statistics. We compared participant characteristics and study outcomes between PwMS and those not living with MS using chi square and t-tests. RESULTS: In this study cohort, PwMS were older, less likely to have a university degree, had lower health literacy, and lower quality of life. PwMS had significantly more healthcare visits in the previous year and visited a more diverse range of provider types than those not living with MS. PwMS were also more likely to report being satisfied with the healthcare they received. Among both PwMS and those not living with MS, higher health literacy and higher healthcare utilization were significantly associated with satisfaction with healthcare sufficiency, quality, and accessibility. CONCLUSION: PwMS were more likely to be satisfied with the healthcare they received compared to those not living with MS. This may be due in part to the differences in health literacy and healthcare utilization between the two groups. We recommend that these relationships be rigorously assessed in future research.

Healthcare utilisation and perceived healthcare accessibility and quality amongst people living with multiple sclerosis enroled in an online course.

BACKGROUND: People living with multiple sclerosis (MS) need access to high quality healthcare and support services. However, many people with MS do not have access to the services that they need. OBJECTIVE: To survey healthcare utilisation and perceived quality and accessibility amongst people living with MS who enroled in a free online course about MS (the Understanding MS massive open online course (MOOC)) and to evaluate the impact of course completion on these outcomes. METHODS: This longitudinal cohort study evaluated participants before they began the course, immediately following completion, and six months following completion. We describe baseline healthcare utilisation and perceived accessibility and quality (N = 813) and identify factors associated with satisfaction using chi-square and t-tests. We evaluate the impact of course completion amongst a sub-group (N = 123) of participants who both completed the course and completed all three assessments using paired t-tests. We determined effect size using Cohen's D. RESULTS: Most participants accessed at least one healthcare service in the month before beginning the course and were satisfied with their healthcare accessibility and quality. Participants who reported being satisfied with their healthcare quality and accessibility had more healthcare visits, and greater MS knowledge, health literacy, quality of life and self-efficacy. Completing the Understanding MS MOOC had no effect on perceived healthcare accessibility or quality. CONCLUSION: Our study suggests that people with MS who access online educational resources are likely to be well resourced in other areas as well. Our findings also suggest that a more targeted intervention may be necessary to improve healthcare accessibility and quality outcomes in people with MS.

Using the EQ-5D-5L to investigate quality-of-life impacts of disease-modifying therapy policies for people with multiple sclerosis (MS) in New Zealand.

BACKGROUND: Health state utilities (HSU) are a health-related quality-of-life (HRQoL) input for cost-utility analyses used for resource allocation decisions, including medication reimbursement. New Zealand (NZ) guidelines recommend the EQ-5D instruments; however, the EQ-5D-5L may not sufficiently capture psychosocial health. We evaluated HRQoL among people with multiple sclerosis (MS) in NZ using the EQ-5D-5L and assessed the instrument's discriminatory sensitivity for a NZ MS cohort. METHODS: Participants were recruited from the NZ MS Prevalence Study. Participants self-completed a 45-min online survey that included the EQ-5D-5L/EQ-VAS. Disability severity was classified using the Expanded Disability Status Scale (EDSS) to categorise participant disability as mild (EDSS: 0-3.5), moderate (EDSS: 4.0-6.0) and severe (EDSS: 6.5-9.5). Anxiety/depression were also measured using the Hospital Anxiety and Depression Score (HADS). In the absence of an EQ-5D-5L NZ tariff, HSUs were derived using an Australian tariff. We evaluated associations between HSUs and participant characteristics with linear regression models. RESULTS: 254 participants entered the study. Mean age was 55.2 years, 79.5% were female. Mean (SD) EQ-5D-5L HSU was 0.58 (0.33). Mean (SD) HSUs for disability categories were: mild 0.80 ± 0.17, moderate 0.57 ± 0.21 and severe 0.14 ± 0.32. Twelve percent reported HSU = 1.0 (i.e., no problems in any domain). Participants who had never used a disease-modifying therapy reported a lower mean HSU. Multivariable modelling found that the HADS anxiety score was not associated with EQ-5D-5L. CONCLUSIONS: HRQoL for people with MS in NZ was lower than comparable countries, including Australia. We suggest a comparison with other generic tools that may have improved sensitivity to mental health.

Validation of the EQ-5D-5L and psychosocial bolt-ons in a large cohort of people living with multiple sclerosis in Australia.

BACKGROUND: Multiple sclerosis (MS) is an inflammatory, neurodegenerative disease of the central nervous system which results in disability over time and reduced quality of life. To increase the sensitivity of the EQ-5D-5L for psychosocial health, four bolt-on items from the AQoL-8D were used to create the nine-item EQ-5D-5L-Psychosocial. We aimed to externally validate the EQ-5D-5L-Psychosocial in a large cohort of people with MS (pwMS) and explore the discriminatory power of the new instrument with EQ-5D-5L/AQoL-8D. METHODS: A large representative sample from the Australian MS Longitudinal Study completed the AQoL-8D and EQ-5D-5L (including EQ VAS) and both instruments health state utilities (HSUs) were scored using Australian tariffs. Sociodemographic/clinical data were also collected. External validity of EQ-5D-5L-Psychosocial scoring algorithm was assessed with mean absolute errors (MAE) and Spearman's correlation coefficient. Discriminatory sensitivity was assessed with an examination of ceiling/floor effects, and disability severity classifications. RESULTS: Among 1683 participants (mean age: 58.6 years; 80% female), over half (55%) had moderate or severe disability. MAE (0.063) and the distribution of the prediction error were similar to the original development study. Mean (± standard deviation) HSUs were EQ-5D-5L: 0.58 ± 0.32, EQ-5D-5L-Psychosocial 0.62 ± 0.29, and AQoL-8D: 0.63 ± 0.20. N = 157 (10%) scored perfect health (i.e. HSU = 1.0) on the EQ-5D-5L, but reported a mean HSU of 0.90 on the alternative instruments. The Sleep bolt-on dimension was particularly important for pwMS. CONCLUSIONS: The EQ-5D-5L-Psychosocial is more sensitive than the EQ-5D-5L in pwMS whose HSUs approach those reflecting full health. When respondent burden is taken into account, the EQ-5D-5L-Psychosocial is preferential to the AQoL-8D. We suggest a larger confirmatory study comparing all prevalent multi-attribute utility instruments for pwMS.

Protocol for a systematic review and meta-analysis of minimal important differences for generic multiattribute utility instruments.

INTRODUCTION: Generic multiattribute utility instruments (MAUIs) are efficient tools for determining and enumerating health-related quality of life. MAUIs accomplish this by generating health state utilities (HSUs) via algorithms. Minimal important differences (MIDs) assist with the interpretation of HSUs by estimating minimum changes that are clinically significant. The overall goal of the proposed systematic review and meta-analysis is the development of comprehensive guidelines for MID estimation. METHODS AND ANALYSIS: This protocol defines a systematic review and meta-analysis of MIDs for generic MAUIs. The proposed research will involve a comprehensive investigation of 10 databases (EconLit, IDEAs database, INAHTA database, Medline, PsycINFO, Embase, Emcare, JBIEBP and CINAHL) from 1 June 2022 to 7 June 2022, and will be performed and reported in accordance with several validated guidelines, principally the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. The quality of papers, considered for inclusion in the review, will be appraised using the COnsensus-based Standards for the selection of health Measurement INstruments, inter alia.Narrative analysis will involve identifying the characteristics of MIDs including methods of calculation, sources of heterogeneity, and validation. Meta-analysis will also be conducted. The descriptive element of meta-analysis will involve the generation of I2 statistics and Galbraith plots of MID heterogeneity. Together with narrative analysis, this will allow sources of MID heterogeniety to be identified. A multilevel mixed model, estimated via restricted maximum likelihood estimation, will be constructed for the purposes of meta-regression. Meta-regression will attempt to enumerate the effects of sources of heterogeneity on MID estimates. Meta-analysis will be concluded with pooling of MIDs via a linear random-effects model. ETHICS AND DISSEMINATION: Ethics approval is not required for this review, as it will aggregate data from published literature. Methods of dissemination will include publication in a peer-reviewed journal, as well as presentation at conferences and seminars. PROSPERO REGISTRATION NUMBER: CRD42021261821.

Reasons for non-completion of a massive open online course about multiple sclerosis: A mixed methods study.

BACKGROUND: Massive open online courses (MOOCs) have grown rapidly in popularity since becoming available worldwide in 2012. There are currently > 30,000 MOOCs available from > 900 universities. However, despite their global reach, MOOCs typically have low completion rates. OBJECTIVE: To evaluate reasons for non-completion among enrolees in the Understanding Multiple Sclerosis (MS) MOOC. METHODS: This was a mixed methods study evaluating quantitative and qualitative data collected in an online questionnaire administered to Understanding MS enrolees who did not complete the course. The quantitative data was evaluated using frequencies, percentages, means, and standard deviations. The qualitative data was assessed using textual analysis. RESULTS: We recruited 397 participants (4.5% of non-completers). Both the qualitative and quantitative data suggests that the primary reasons for non-completion were time constraints and/or limitations. Some of these were exacerbated by the COVID-19 pandemic. People with MS also cited MS-related symptoms as a reason for non-completion. Suggested changes to the course reflected these results and included extending the course open period and making it self-paced. CONCLUSION: Although it was impossible to determine if study participants were representative of all non-completers due to selection bias, the results provide useful information for developing future MS educational resources. Accessibility, particularly addressing potential challenges related to MS symptoms and time constraints, should be a primary consideration when developing an educational resource for the MS community.

Gains in multiple sclerosis knowledge following completion of the Understanding Multiple Sclerosis online course are maintained six months after course completion.

BACKGROUND: Participation in the Understanding Multiple Sclerosis (MS) massive open online course (MOOC) significantly increases MS knowledge in both people living with MS (pwMS) and not living with MS at course completion. We also observed modest increases in health literacy, self-efficacy, and quality of life. OBJECTIVE: To examine long-term participant knowledge retention over a six-month follow-up period following completion of the Understanding MS MOOC, a freely available six-week online health education intervention. METHODS: We conducted pre-post analysis using paired t-tests to determine the effect of the course on MS knowledge (primary outcome), health literacy, resilience, self-efficacy, quality of life, and MS symptom severity among pwMS and not living with MS. We assessed the effect of participant characteristics on the change in MS knowledge using linear regression. RESULTS: Both pwMS (N=139) and not living with MS (N=164) significantly increased MS knowledge over the follow-up period. PwMS also showed increases in health literacy and self-efficacy. These increases were largely maintained from the post-course assessment. There was no effect on resilience or quality of life. CONCLUSIONS: The Understanding MS MOOC significantly increased MS knowledge and this knowledge was maintained six months after course completion. Our results reinforce the importance and potential impact of health education in the MS community.

Measurement Properties of the Health Literacy Questionnaire in the Understanding Multiple Sclerosis Massive Open Online Course Cohort: A Rasch Analysis.

BACKGROUND: Online health education and other electronic health improvement strategies are developing rapidly, highlighting the growing need for valid scales to assess health literacy (HL). One comprehensive HL scale is the Health Literacy Questionnaire (HLQ), but little is known about its measurement properties in online health education cohorts. OBJECTIVE: The purpose of this study was to determine if the multidimensional HLQ is an appropriate tool to measure HL in a cohort of Understanding Multiple Sclerosis (MS) online course enrollees. METHODS: Participants who enrolled in the first two open enrollments of the Understanding MS online course completed the HLQ (N = 1,182) in an online survey prior to beginning course materials. We used Rasch analysis to assess the measurement properties of the HLQ. KEY RESULTS: The nine Domains of the HLQ each had ordered category function and a good fit with the Rasch model. Each domain was one-dimensional and exhibited good internal consistency and reliability. None of the 44 individual items of the HLQ demonstrated item bias or local dependency. However, while the overall fit was good, few measurement gaps were identified in this cohort for participants in each of the nine Domains, meaning that the HLQ may have low measurement precision in some participants. CONCLUSION: Our analysis of the HLQ indicated acceptable measurement properties in a cohort of Understanding MS online course enrollees. Although reliable information on nine separate constructs of HL was obtainable in the current study indicating that the HLQ can be used in similar cohorts, its limitations must be also considered. [HLRP: Health Literacy Research and Practice. 2022;6(3):e200-e212.] Plain Language Summary: In this study, we have shown that the HLQ is suitable for measuring HL in an online public health educational platforms for chronic diseases including multiple sclerosis. This finding adds to the evidence that the HLQ can be widely used in measuring HL in different settings, populations, and health educational platforms.

Estimating the impact of work difficulties, work self-efficacy and work psychological safety on MS-related work productivity loss.

BACKGROUND: A comprehensive understanding of factors associated with multiple sclerosis (MS)-related work productivity loss will inform targeted interventions. We have previously shown the strong impact of symptom severity on MS-related work productivity loss. However, the effect of work difficulties, work self-efficacy and work psychological safety is yet to be well evaluated in this context. OBJECTIVES: This study evaluates the association between work difficulties, work self-efficacy and work psychological safety, and MS-related presenteeism, absenteeism and total work productivity loss. METHODS: We analysed data from employed participants of the Australian MS Longitudinal Study (AMSLS) who took part in both the 2015 Medication and Disease Course survey, and 2015 Employment survey (n = 744). Data were analysed using Cragg Hurdle regression models. RESULTS: We found that low workplace self-esteem, interpersonal difficulties at work and work self-efficacy were associated with total work productivity loss. In a multivariable model, a 10-unit decrease in workplace self-esteem, increase in interpersonal difficulties at work and 5-unit increase in work self-efficacy were independently associated with a 3.75% increase, 2.89% increase and 3.36% reduction in total work productivity loss, respectively. When separating total work productivity loss in presenteeism and absenteeism, stronger effects were seen for presenteeism than absenteeism. Surprisingly, work psychological safety was not associated with MS-related work productivity loss. CONCLUSION: Work psychosocial well-being such as self-confidence at work, work self-efficacy and interpersonal difficulties at work are crucial factors governing work productivity in people with MS (PwMS). Multidisciplinary support team assistance of PwMS in symptom self-care, skills around effective communication about MS in the workplace, the psychological impact of work and the modification of work demands may positively influence the employment outcomes.

Long-term trajectories of employment status, workhours and disability support pension status, after a first episode of CNS demyelination.

BACKGROUND: People with multiple sclerosis face significant employment-related challenges, with little known of the drivers of these outcomes. OBJECTIVE: We examined prospective trajectories of employment-related outcomes up to 11 years following a first episode of central nervous system (CNS) demyelination (FCD). METHODS: Participants were aged 18-59 years, at FCD, with at least two observations and were employed at study entry or anytime during follow-up (n = 207). Outcomes were employment status (full-time, part-time and unemployed), average workhours per week and disability support pension (DSP; receiving/not receiving). We used group-based trajectory modelling to identify groups with common trajectories. Factors associated with trajectory membership were explored using log-multinomial regression. RESULTS: Distinct trajectories were identified for employment (4), workhours (4) and DSP (2). Compared with stable full-time, female sex was strongly associated with being in the stable part-time trajectory (risk ratio (RR): 5.35; 95% confidence interval (CI) = 2.56-11.20; p < 0.001). A greater level of disability at 5-year review (RR: 1.35; 95% CI = 1.19-1.53) and having more than two comorbidities at baseline (RR: 2.77; 95% CI = 1.37-5.64) were associated with being in early and late deteriorated employment trajectories, respectively. Compared with the increased part-time trajectory, every additional relapse during the 5 years post-FCD was associated with a 10% increased risk of being in the reduced part-time trajectory (RR = 1.10; 95%CI = 1.00-1.22). For every additional EDSS point at 5-year review, the risk of being in the DSP trajectory increased (RR = 1.21; 95% CI = 1.05-1.41). CONCLUSION: These trajectories indicate substantial heterogeneity and the complex impact of MS on employment from its earliest timepoints. Understanding these trends could enable better targeting of interventions to facilitate workforce retention, particularly for females, those with a higher number of comorbidities, more frequent relapses and greater rate of disability accrual.

Evaluating the impact of the Understanding Multiple Sclerosis online course on participant MS knowledge, health literacy, resilience, self-efficacy, quality of life, and MS symptom severity.

BACKGROUND: Little is known about the impact of online health education on multiple sclerosis (MS)-related knowledge and other health outcomes in the MS community. OBJECTIVES: To estimate the impact of participating in a massive open online course (MOOC) about MS on course completer MS-related knowledge, health literacy (HL), self-efficacy, resilience, quality of life, and MS symptom severity. METHODS: In this cohort study, using a single group pre-test/post-test design (n=560), we examined the effects of MOOC participation on MS-related knowledge and other outcomes using a paired t-test. We used regression and structural equation modelling to examine the association between participant characteristics, changes in other outcomes, and changes in MS-related knowledge. RESULTS: We found significant increases in MS-related knowledge for people living with MS (PwMS) (+2.13 points, p<0.001) and those without MS (+5.16 points, p<0.001), with larger effect sizes for those with higher educational levels. Among PwMS, there were also significant increases in seven HL subscales and self-efficacy, but no increase in resilience, MS symptoms severity or quality of life. Among people without MS, there were increases in two HL subscales and quality of life, but no increase in resilience or self-efficacy. Changes in MS-related knowledge were not associated with sex or changes in other study outcomes. CONCLUSIONS: There was a significant increase in MS-related knowledge, which was unrelated to the changes in the other study outcomes, both for PwMS and for those not living with MS. Outcome-specific health educational interventions may be needed to effect change in other health outcomes.

Psychological impacts of COVID-19 pandemic on individuals living with multiple sclerosis: A rapid systematic review.

INTRODUCTION: The global spread of COVID-19 has raised concerns about its possible impact on mental health. People living with multiple sclerosis (PwMS) are considered potentially vulnerable to the mental health effects of the pandemic, as they may be subject to increased social isolation. AIM: To systematically review the current evidence on the impact of the COVID-19 pandemic on mental health outcomes among PwMS. METHOD: We searched four major databases (Medline, EMBASE, PsychInfo and Scopus) and the WHO Global Health COVID-19 research database. We included peer-reviewed primary research studies using validated health-related quality of life (HRQOL) and psychometric screening tools to evaluate mental health outcomes among PwMS during the COVID-19 pandemic. Studies reporting data on the prevalence of mental health disorders, severity of psychological symptoms and contributing demographic and clinical factors for PwMS during the COVID-19 pandemic were included. RESULTS: Our initial search yielded 268 records; 19 studies (13 cross-sectional, 6 longitudinal) were included. Most were conducted during a peak in the pandemic in the host country via an online platform. The main mental health outcomes were depression, anxiety, stress, sleep quality and HRQOL. The included studies used a variety of outcome assessment tools and study designs. The prevalence of mental health issues such as depression, anxiety and stress were high among PwMS during the pandemic. In addition, compared to control populations, PwMS experienced more severe symptoms of depression and stress during the COVID-19 outbreak. However, results from longitudinal studies demonstrate that the severity of mental health symptoms among PwMS during the pandemic were not significantly different compared with the pre-pandemic period. CONCLUSION: Although mental health issues such as anxiety and depression were common among PwMS during the pandemic, current evidence suggests that mental health among PwMS has not been significantly affected by pandemic-related restrictive measures. Instead, the observed differences may be the result of pre-pandemic differences in prevalence and severity. Where possible, future studies should seek to address the methodological issues identified in the included studies to ensure that data collected during the pandemic can be synthesized into recommendations for policy and practice.

An exploratory study regarding communication facilitators and barriers reported by a cohort of multiple sclerosis (MS) community members from the international massive open online course 'Understanding MS'.

BACKGROUND: Effective communication is essential for high-quality multiple sclerosis (MS)-related healthcare, but significant knowledge and practice gaps remain in this area. The aim of this study was to explore facilitators and barriers of communication about MS reported by members of the MS community. METHODS: We conducted an exploratory mixed method study analysing self-reported facilitators and barriers to communication among MS community members participating in a free international online course about MS (called Understanding MS) who commented on an optional discussion board. We quantitatively compared commenters with course participants who did not comment and, among commenters, compared health information consumers (people with MS, caregivers) and suppliers (healthcare providers, service providers, researchers) using chi square and t-tests. We evaluated free text discussion board responses for emergent themes, comparing and contrasting consumer and supplier responses. RESULTS: We found that the sociodemographic characteristics of commenters (n = 262) were similar to course participants overall including age, sex and MS community role. However, among commenters, consumers (n = 152) were about 9 years older than suppliers (n = 57) on average (mean age consumers 52.9 years; suppliers 44.0 years p<0.001), and were less likely to have a university degree (p = 0.004) or live in Australia (the course host country representing almost 60% of the cohort; p<0.001). Nonetheless, consumers and suppliers listed similar facilitators for communication about MS: honesty, kindness/empathy/compassion, openness, and effective listening. Consumers further prioritized clarity and patience. Consumers were also more likely to list barriers to communication, commonly listing the following barriers: encountering a lack of knowledge about MS, the invisible symptoms of MS, uncertainty about the appropriate amount of communication, and concern about being perceived as complaining and/or burdening others. Finally, consumers also discussed communication as a means to educate others about MS. CONCLUSIONS: Effective communication remains a challenge in the MS community, particularly between health information suppliers and health information consumers. The results of this exploratory study highlight areas that should be considered when developing communication strategies for MS community members. A larger confirmatory study of MS health information consumers and suppliers that uses focus groups and individual interviews could be conducted to further explore these emerging themes.

Assessing the Impact of Online Health Education Interventions From 2010-2020: A Systematic Review of the Evidence.

OBJECTIVE: Systematically review the evaluation and impact of online health education interventions: assess approaches used, summarize main findings, and identify knowledge gaps. DATA SOURCE: We searched the following databases: EMBASE, ERIC, MEDLINE, and Web of Science. STUDY INCLUSION AND EXCLUSION CRITERIA: Studies were included if (a) published in English between 2010-2020 in a peer-reviewed journal (b) reported an online health education intervention aimed at consumers, caregivers, and the public (c) evaluated implementation OR participant outcomes (d) included ≥ 100 participants per study arm. DATA EXTRACTION: Two authors extracted data using a standardized form. DATA SYNTHESIS: Data synthesis was structured around the primary outcomes of the included studies. RESULTS: 26 studies met the inclusion criteria. We found substantial heterogeneity in study population, design, intervention, and primary outcomes, and significant methodological issues that resulted in moderate to high risk of bias. Overall, interventions that were available to all (e.g., on YouTube) consistently attained a large global reach, and knowledge was consistently improved. However, the impact on other outcomes of interest (e.g., health literacy, health behaviors) remains unclear. CONCLUSION: Evidence around the impacts of the type of online health education interventions assessed in this review is sparse. A greater understanding of who online interventions work for and what outcomes can be achieved is crucial to determine, and potentially expand, their place in health education.

The effect of national disease-modifying therapy subsidy policy on long-term disability outcomes in people with multiple sclerosis.

BACKGROUND: Disease-modifying therapies (DMTs) are used to treat people with relapsing-onset multiple sclerosis (ROMS), but our knowledge is largely limited to their short-term effects. OBJECTIVE: To determine (1) the impact of national-level DMT subsidy policy on DMT use and health outcomes in people with MS (PwMS) and (2) the long-term effects of DMT on disability and quality of life (QoL; 5-level EQ-5D version (EQ-5D-5L) utility value). METHODS: This observational cohort study compared Australian and New Zealand populations with different levels of DMT availability 10-20 years post-ROMS diagnosis. Between-country differences were assessed using standardised differences. Associations were assessed with multivariable linear regression models. RESULTS: We recruited 328 Australians and 256 New Zealanders. The Australian cohort had longer DMT treatment duration, greater proportion of disease course treated and shorter duration between diagnosis and starting DMT. The Australian cohort had lower median Expanded Disability Status Scale (EDSS) (3.5 vs 4.0) and Multiple Sclerosis Severity Score (MSSS) (3.05 vs 3.71) and higher QoL (0.71 vs 0.65). In multivariable models, between-country differences in disability and QoL were largely attributed to differential use of DMT. CONCLUSIONS: This study provides evidence for the impact of national-level DMT policy on disability outcomes in PwMS. Where DMTs are more accessible, PwMS experienced less disability progression and improved QoL 10-20 years post-diagnosis.