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.

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).

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.

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.

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.

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.

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.

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.

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.

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.

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 ( = 207).

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.

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.

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.

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.

Role of environmental factors in multiple sclerosis.

Introduction: Environmental factors play a significant role in the pathogenesis and progression of multiple sclerosis (MS), either acting alone or by interacting with other environmental or genetic factors. This cumulative exposure to external risk factors is highly complex and highly variable between individuals.

Areas Covered: We narratively review the current evidence on the role of environment-specific risk factors in MS onset and progression, as well as the effect of gene-environment interactions and the timing of exposure We have reviewed the latest literature, by Ovid Medline, retrieving the most recently published systematic reviews and/or meta-analyses and more recent studies not previously included in meta-analyses or systematic reviews.

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.

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.

Association between MS-related knowledge, health literacy, self-efficacy, resilience, and quality of life in a large cohort of MS community members: A cross-sectional study.

Background: Despite their potential importance, little is known about the associations between multiple sclerosis (MS) knowledge and other outcomes among MS community members.

Objective: To examine the relationships between MS-related knowledge, health literacy, self-efficacy, resilience, quality of life (QoL), and MS symptom severity in a cohort of MS community members.

Methods: In this cross-sectional study (N = 1993), we assessed a cohort of Understanding MS online course enrolees using means and standard deviations.

Work productivity trajectories of Australians living with multiple sclerosis: A group-based modelling approach.

Background: Studies have documented reduced work capacity and work productivity loss in multiple sclerosis (MS). Little is known about the longitudinal trajectories of work productivity in MS.

Objectives: To examine trajectories of work productivity in people living with multiple sclerosis (PwMS) and the factors associated with the trajectories.

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.

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 ( = 2121).

Assessing the consistency and validity of self-reported year of diagnosis among participants in a longitudinal study of people with multiple sclerosis.

Background: Self-reported outcomes are important for epidemiological research but are vulnerable to bias.

Objective: In this study, we evaluated: 1) the consistency and validity of self-reported year of diagnosis among people living with MS, 2) factors associated with participant inconsistency, and 3) the impact of observed inconsistency on the calculation of the Multiple Sclerosis Severity Score (MSSS).

Methods: Using data collected by the Australian MS Longitudinal Study, we evaluated the consistency of self-reported year of diagnosis using correlation, mean differences, and percentage agreement.