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.

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 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.

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.

Exploring the Health-Promoting Potential of the "parkrun" Phenomenon: What Factors are Associated With Higher Levels of Participation?

PURPOSE: " parkrun" is a free and increasingly popular weekly 5-km walk/run international community event, representing a novel setting for physical activity (PA) promotion. However, little is known about who participates or why. This study aimed to identify sociodemographic, health, behavioral, individual, social, and environmental factors associated with higher levels of participation. DESIGN: Cross-sectional. SETTING: Tasmania, Australia; June 2016. PARTICIPANTS: Three hundred seventy two adult parkrun participants. MEASURES: Online survey measuring sociodemographic, health, individual, social and environmental factors, parkrun participation, and PA. ANALYSIS: Descriptive statistics, zero-truncated Poisson regression models. RESULTS: Respondents (n = 371) were more commonly women (58%), aged 35 to 53 years (54%), and occasional or nonwalkers/runners (53%) at registration. A total of 44% had overweight/obesity. Half had non-adult children, most spoke English at home, and 7% reported PA-limiting illness/injury/disability. Average run/walk time was 30.2 ± 7.4 minutes. Compared to regular walkers/runners at registration, nonwalkers/runners were less commonly partnered, more commonly had overweight/obesity, less physically active, and had poorer self-rated health. Multivariate analyses revealed relative parkrun participation was inversely associated with education level and positively associated with interstate parkrun participation, perceived social benefits, self-efficacy for parkrun, and intentions to participate. CONCLUSION: parkrun attracts nonwalkers/runners and population groups hard to engage in physical activity. Individual- and social-level factors were associated with higher relative parkrun participation. parkrun's scalability, accessibility, and wide appeal confers a research imperative to investigate its potential for public health gain.