Publications by authors named "Ingrid Van der Mei"

Objectives: Studies have shown that people living with multiple sclerosis (PwMS) were substantially impacted by the COVID-19 pandemic. However, no study has compared the overall health-related quality of life impact of the COVID-19 pandemic on PwMS and the general population. Differences would have implications for crises/pandemic management policies.

View Article and Find Full Text PDF
Article Synopsis
  • Multiple sclerosis (MS) significantly impacts health economics, particularly due to the often-overlooked costs of informal caregiving, leading to limited data for decision-making among policymakers.
  • This review synthesized global evidence on the economic burden of informal care for MS, analyzing 61 relevant studies across 25 countries and calculating the average annual cost of informal care at approximately USD $6,308 per person.
  • Findings reveal that informal care costs escalate with the severity of MS disability and vary by country income level, emphasizing the need for these costs to be integrated into health economics models for better reimbursement decisions regarding MS care.
View Article and Find Full Text PDF

Purpose: Many people living with multiple sclerosis (PwMS) experience poor sleep, which is associated with diminished overall health-related quality of life (HRQoL). We quantified associations between sleep quality and HRQoL domains and examined the extent to which other MS symptoms could account for these associations.

Methods: In this cross-sectional survey of 1,717 Australians with MS, we used Assessment of Quality of Life (AQoL) 8D and Pittsburgh Sleep Quality Index (PSQI) to assess HRQoL and sleep quality, respectively.

View Article and Find Full Text PDF

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.

View Article and Find Full Text PDF
Article Synopsis
  • - The study investigates the impact of sun exposure on the risk of progressive-onset multiple sclerosis (POMS) compared to relapse-onset multiple sclerosis (ROMS), finding that increased sun exposure is linked to a lower risk for both types.
  • - Data was gathered from two nationwide studies, including environmental UV radiation exposure prior to the first MS symptoms among 153 POMS cases, 204 ROMS cases, and 558 control participants.
  • - Results indicate that higher cumulative sun exposure reduces the onset risk for both POMS and ROMS, with a stronger effect observed for POMS, suggesting that lifelong sun exposure plays an important role in MS risk.
View Article and Find Full Text PDF

Background: Previous natural history studies highlighted a consistent heterogeneity of disability trajectories among individuals with primary or secondary progressive multiple sclerosis (MS). However, evidence on disability progression in relapsing onset MS is scarce.The aim of this study was to investigate heterogeneity in disability accumulation over 10 years following a first clinical diagnosis of central nervous system demyelination (FCD) and identify genetic, demographic, environmental and clinical factors associated with these trajectories.

View Article and Find Full Text PDF

Background: Disability is a key factor related to self-concept change following a Multiple Sclerosis (MS) diagnosis. Psychosocial factors (e.g.

View Article and Find Full Text PDF

Background: Multiple sclerosis (MS) prevalence is increasing globally.

Objectives: To determine whether increased prevalence is continuing within Australia using our validated prescription-based ascertainment method.

Methods: We used methods employed in our 2010 and 2017 prevalence estimates.

View Article and Find Full Text PDF

Background: Multiple sclerosis (MS) is a chronic autoimmune/neurodegenerative disease associated with progressing disability affecting mostly women. We aim to estimate transition probabilities describing MS-related disability progression from no disability to severe disability. Transition probabilities are a vital input for health economics models.

View Article and Find Full Text PDF

Introduction: Multiple sclerosis (MS) causes a wide variety of symptoms. Loss of income due to sickness and early retirement comprise one-third of the total cost of MS in Australia. An intervention that maximises work productivity and keeps people with MS in the workforce for longer could provide a large societal cost saving and improve quality of life.

View Article and Find Full Text PDF

Background: Comorbidities and poor sleep quality are prevalent among individuals with multiple sclerosis (MS). Our understanding of the effects of comorbidities on sleep quality in MS remains limited.

Objectives: The objectives were to investigate whether the number and presence of specific comorbidities have associations with sleep quality and to assess the relative contribution of comorbidity groups to sleep quality.

View Article and Find Full Text PDF

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).

View Article and Find Full Text PDF
Article Synopsis
  • - As of September 2022, a lack of standardized core data elements for multiple sclerosis (MS) hindered effective data sharing and collaboration in healthcare and research.
  • - A global task force of 20 experts developed a core dataset of 44 variables in eight categories to improve data consistency from real-world data sources, which includes demographic information, disease history, MRI results, and treatment details.
  • - The resulting MS Data Alliance Core Dataset aims to assist newly formed and existing registries, promoting data harmonisation and improving research outcomes in the field of MS.
View Article and Find Full Text PDF

Background: Increasing evidence suggests the potential of Epstein-Barr virus (EBV) vaccination in preventing multiple sclerosis (MS). We aimed to explore the cost-effectiveness of a hypothetical EBV vaccination to prevent MS in an Australian setting.

Methods: A five-state Markov model was developed to simulate the incidence and subsequent progression of MS in a general Australian population.

View Article and Find Full Text PDF

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.

View Article and Find Full Text PDF
Article Synopsis
  • This study investigates the relationship between environmental factors and progressive-onset multiple sclerosis (POMS) compared to relapse-onset multiple sclerosis (ROMS), aiming to better understand the causes of POMS.
  • Data is drawn from two major studies, including a sample of 155 POMS, 204 ROMS, and 558 controls, ensuring that the POMS sample is representative of the broader Australian POMS population.
  • The research addresses various methodological challenges, such as biases and differences between POMS and controls, and will present findings on the associations in future publications.
View Article and Find Full Text PDF

Background: Self-concept change may impact psychological wellbeing and functioning in people with MS (pwMS). However, the extent and nature of change in self-concept that pwMS experience is poorly understood, owing to the lack of quantitative measures available to assess this construct.

Objective: To examine the factor structure, validity, and internal consistency of the newly developed Multiple Sclerosis Self-Concept Change Scale (MSSCCS).

View Article and Find Full Text PDF

Background And Objectives: In multiple sclerosis (MS), accelerated aging of the immune system (immunosenescence) may be associated with disease onset or drive progression. DNA methylation (DNAm) is an epigenetic factor that varies among lymphocyte subtypes, and cell-specific DNAm is associated with MS. DNAm varies across the life span and can be used to accurately estimate biological age acceleration, which has been linked to a range of morbidities.

View Article and Find Full Text PDF

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.

View Article and Find Full Text PDF

Background And Aims: Relapses are an important clinical feature of multiple sclerosis (MS) that result in temporary negative changes in quality of life (QoL), measured by health state utilities (HSUs) (disutilities). We aimed to quantify disutilities of relapse in relapsing remitting MS (RRMS), secondary progressive MS (SPMS), and relapse onset MS [ROMS (including both RRMS and SPMS)] and examine these values by disability severity using four multi-attribute utility instruments (MAUIs).

Methods: We estimated (crude and adjusted and stratified by disability severity) disutilities (representing the mean difference in HSUs of 'relapse' and 'no relapse' groups as well as 'unsure' and 'no relapse' groups) in RRMS (n = 1056), SPMS (n = 239), and ROMS (n = 1295) cohorts from the Australian MS Longitudinal Study's 2020 QoL survey, using the EQ-5D-5L, AQoL-8D, EQ-5D-5L-Psychosocial, and SF-6D MAUIs.

View Article and Find Full Text PDF

Background: Poor sleep is common in multiple sclerosis (MS) and may impact daily functioning. The extent to which disease-modifying therapies (DMTs) contribute to sleep outcomes is under-examined.

Objective: To compare the effects of DMTs on sleep outcomes in an Australian cohort of people with MS and investigate associations between DMT use and beliefs about sleep problems and daily functioning (social functioning and activity engagement).

View Article and Find Full Text PDF

The indirect contribution of multiple sclerosis (MS) relapses to disability worsening outcomes, and vice-versa, remains unclear. Disease modifying therapies (DMTs) are potential modulators of this association. Understanding how these endo-phenotypes interact may provide insights into disease pathogenesis and treatment practice in relapse-onset MS (ROMS).

View Article and Find Full Text PDF

Background: A pro-inflammatory diet has been posited to induce chronic inflammation within the central nervous system (CNS), and multiple sclerosis (MS) is an inflammatory disease of the CNS.

Objective: We examined whether Dietary Inflammatory Index (DII) scores are associated with measures of MS progression and inflammatory activity.

Methods: A cohort with a first clinical diagnosis of CNS demyelination was followed annually (10 years,  = 223).

View Article and Find Full Text PDF

Background: Multiple sclerosis (MS) is a chronic demyelinating/neurodegenerative disease associated with change in cognitive function (CF) over time. This systematic review aims to describe the instruments used to measure change in CF over time in people with MS (PwMS).

Methods: PubMed, OVID, Web of Science, and Scopus databases were searched in English until May 2021.

View Article and Find Full Text PDF