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.

The subjective wellbeing of people living with Multiple Sclerosis in Australia: insights from the Personal Wellbeing Index.

OBJECTIVES: Subjective wellbeing has been defined as an individual's personal appraisal of their quality of life. Subjective wellbeing is associated with positive health behaviours and improved coping abilities. This study aimed to investigate the subjective wellbeing of people living with multiple sclerosis (MS), using the novel Personal Wellbeing Index, and make comparisons with the general population. METHODS: Cross-sectional data was obtained from the Australian Multiple Sclerosis Longitudinal Study and the How Is Your Life Australian general population study in August-October 2020. Subjective wellbeing was measured as life satisfaction using the Personal Wellbeing Index. This instrument measures life satisfaction globally and in seven life domains, allowing the importance of domain-specific life satisfaction to be explored. Descriptive and multivariable regression analyses were conducted. RESULTS: One thousand six hundred eighty-three MS and 1,021 general population participants entered the study (mean age 52.4 and 58.6; female 79.9% and 52.4%, respectively). For people living with MS the most important life domains were standard of living and achieving in life. The domain of personal health was more influential for people living with MS (p < 0.01) than the general population. The life domains most susceptible to MS-related disability were personal health, achieving in life, and community connectedness (p < 0.01 for these domains). CONCLUSION: Personal health and achieving in life are key domains through which the subjective wellbeing of people living with MS is modified. This study recommends the development of interventions to support healthy perceptions of illness and continued employment as paramount in improving the subjective wellbeing of people living with MS.

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.

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.

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.

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.

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.

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

ISSUE ADDRESSED: Evaluated the impact of Understanding Multiple Sclerosis (MS) massive open online course, which was intended to increase understanding and awareness about MS, on self-reported health behaviour change. METHODS: Observational cohort study evaluating pre- (baseline) and post-course (8-10-week 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 with those who did not using chi square and t tests. Participant characteristics, change types and change improvement were described descriptively. RESULTS: A total of N = 560 course completers were included in this study. The study cohort included MS community members (eg, people with MS, health care providers) and nonmembers. Two hundred and forty-seven (44.1%) reported behaviour change in ≥1 area at follow-up, 160 (64.8%) reported a measurable change and, of these, 109 (68.1%) showed improvement. Participants who reported a change and those who improved had significantly lower precourse health behaviours and characteristics (eg, quality of life, diet quality). The most reported change types were knowledge, exercise/physical activity, diet and care practice. CONCLUSION: Understanding MS encourages health behaviour change among course completers, primarily through the provision of information and goal-setting activities and discussions. SO WHAT?: An online education intervention can effectively encourage health behaviour change over an 8-10-week follow-up period. Information provision, including both scientific evidence and lived experience, and goal-setting activities and discussions are the primary mechanisms underpinning that change.

Development and psychometric properties of the Multiple Sclerosis Knowledge Assessment Scale: Rasch analysis of a novel tool for evaluating MS knowledge.

BACKGROUND: Multiple sclerosis (MS)-related knowledge is an important evaluation metric for health education interventions. However, few MS knowledge assessment tools are currently available for use. OBJECTIVES: This study aims to develop a reliable and valid Multiple Sclerosis Knowledge Assessment Scale (MSKAS) for use in the MS community and the general public. METHODS: The MSKAS was developed using a Delphi study methodology and was administered to participants in the first open enrolment of the Understanding Multiple Sclerosis (UMS) online course. Rasch analysis was used to examine its psychometric properties and develop the final scale. RESULTS: Experts from across the MS community participated in the development of the MSKAS, resulting in an initial scale of 42 items. Five hundred and forty-three UMS participants completed the MSKAS; 89% were female and 30% were people with MS. The final unidimensional 22-item scale has a person separation index of 2.16, a person reliability index of 0.82, an item separation index of 11.19, and a Cronbach's alpha (kr-20) test reliability of 0.87. CONCLUSION: The MSKAS is a unidimensional scale with good construct validity and internal consistency. The MSKAS has the potential to be useful for the assessment of MS knowledge in research and clinical practice.

Changes in multiple sclerosis symptoms are associated with changes in work productivity of people living with multiple sclerosis.

BACKGROUND: While employment rates have increased in people with multiple sclerosis (PwMS), little is known about the longitudinal trends of work productivity. OBJECTIVE: To describe the longitudinal patterns of work productivity and examine the factors associated with annual change of work productivity of PwMS. METHODS: Study participants were employed participants of the Australian MS Longitudinal Study (AMSLS) followed from 2015 to 2019 with at least two repeated measures (n = 2121). We used linear mixed models to examine if the within-individual variations in MS symptoms are associated with changes in work productivity. RESULTS: The mean annual change in work productivity between 2015 and 2019 was -0.23% (SD = 18.68%). Not the actual severity of symptoms but rather the changes in severity of symptoms that are associated with change in work productivity in the same year. In a multivariable model, every unit increase in mean annual change in 'pain and sensory symptoms', 'feelings of anxiety and depression', and 'fatigue and cognitive symptoms' were independently associated with 2.43%, 1.55% and 1.01% annual reductions in work productivity, respectively. CONCLUSION: Individual changes in work productivity are largely driven by the changes in symptom severity rather than the absolute severity. Stabilising/improving MS symptoms might improve work productivity.

Evaluating Course Completion, Appropriateness, and Burden in the Understanding Multiple Sclerosis Massive Open Online Course: Cohort Study.

BACKGROUND: Massive open online course (MOOC) research is an emerging field; to date, most research in this area has focused on participant engagement. OBJECTIVE: The aim of this study is to evaluate both participant engagement and measures of satisfaction, appropriateness, and burden for a MOOC entitled Understanding Multiple Sclerosis (MS) among a cohort of 3518 international course participants. METHODS: We assessed the association of key outcomes with participant education level, MS status, caregiver status, sex, and age using summary statistics, and 2-tailed t tests, and chi-square tests. RESULTS: Of the 3518 study participants, 928 (26.37%) were people living with MS. Among the 2590 participants not living with MS, 862 (33.28%) identified as formal or informal caregivers. Our key findings were as follows: the course completion rate among study participants was 67.17% (2363/3518); the course was well received, with 96.97% (1502/1549) of participants satisfied, with an appropriate pitch and low burden (a mean of 2.2 hours engagement per week); people living with MS were less likely than those not living with MS to complete the course; and people with a recent diagnosis of MS, caregivers, and participants without a university education were more likely to apply the material by course completion. CONCLUSIONS: The Understanding MS MOOC is fit for purpose; it presents information in a way that is readily understood by course participants and is applicable in their lives.

Redefining the Multiple Sclerosis Severity Score (MSSS): The effect of sex and onset phenotype.

BACKGROUND: The Multiple Sclerosis Severity Score (MSSS) is a widely used measure of the disability progression rate. However, the global MSSS may not be the best basis for comparison between all patient groups. OBJECTIVE: We evaluated sex-specific and onset phenotype-specific MSSS matrices to determine if they were more effective than the global MSSS as a basis for comparison within these subsets. METHODS: Using a large international dataset of multiple sclerosis (MS) patient records and the original MSSS algorithm, we constructed global, sex-specific and onset phenotype-specific MSSS matrices. We compared matrices using permutation analysis. RESULTS: Our final dataset included 30,203 MS cases, with 28.9% males and 6.5% progressive-onset cases. Our global MSSS matrix did not differ from previously published data (p > 0.05). The progressive-onset-specific matrix differed significantly from the relapsing-onset-specific matrix (p < 0.001), with lower MSSS attributed to cases with the same Expanded Disability Status Score (EDSS) and disease duration. When evaluated with a simulation, using an onset-specific MSSS improved statistical power in mixed cohorts. There were no significant differences by sex. CONCLUSION: The differences in the disability accrual rate between progressive- and relapsing-onset MS have a significant effect on MSSS. An onset-specific MSSS should be used when comparing the rate of disability progression among progressive-onset cases and for mixed cohorts.

Building a Successful Massive Open Online Course About Multiple Sclerosis: A Process Description.

BACKGROUND: Over the course of a year, we developed and tested a 6-week massive open online course (MOOC) on multiple sclerosis (MS) in consultation with the MS community. The course targeted the MS community and interested laypeople and was titled Understanding MS. The primary purpose of the course was to improve MS knowledge, health literacy, and resilience among participants. The final version of the MOOC made available for open enrollment was ranked first among all MOOCs released in 2019 (n>2400) based on participant reviews. OBJECTIVE: The aim of this study was to present a detailed description and assessment of the development process of the Understanding MS MOOC. METHODS: The development process included a course development focus group; the creation of more than 50 content videos and related text, quizzes, activities, and discussion prompts; the creation of original images and animations; a pilot study; and collaborations with people living with MS, MS nurses, allied health care practitioners, and neurologists and researchers from 4 universities. RESULTS: Overall, the process was efficient and effective. With a few small changes, we recommend this approach to those seeking to develop a similar course. This process led to the development of a highly reviewed MOOC with excellent user satisfaction. CONCLUSIONS: We identified 5 key lessons from this process: (1) community support is essential, (2) stakeholder involvement improves content quality, (3) plan for research from the beginning, (4) coordination between the academic lead and project manager team ensures a consistent voice, and (5) a network of collaborators is a key resource.

Complementary and alternative treatments of multiple sclerosis: a review of the evidence from 2001 to 2016.

People with multiple sclerosis (PwMS) commonly use complementary and alternative medicines (CAM), but an understanding of their efficacy is lacking. Here, we quantitatively review the class I and class II studies of treatment efficacy for multiple sclerosis from January 2001 to January 2017, in order to assess the modern evidence for CAM use. The 38 studies included in this review are divided across five CAM types (cannabis, diet, exercise, psychological approaches and other). We found little evidence to support CAM efficacy. The studies contained little replication in intervention, primary outcomes or study design. Six of 16 CAMs included in this review were only researched in a single study. Future work in this area should build consensus around study methodologies and primary outcomes.

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.

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.

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.

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.