Work productivity and education in multiple sclerosis
Creators: name: Bessing, B
Publisher: name: University of Tasmania
Year: 2024

description: Multiple sclerosis (MS) has a substantial impact on work outcomes and quality of life. This thesis has two overarching themes and aims: 1) to investigate factors associated with both short- and long-term work productivity among employed persons living with MS (PwMS); and 2) to investigate the impact of online MS-related education and information provision on disease-related knowledge and other health outcomes.<br>Theme 1 of this thesis used data from the Australian MS Longitudinal Study (AMSLS). The AMSLS data platform, established in 2002, is a large ongoing longitudinal cohort study with around 2,500 to 3,200 active Australian participants with MS between 2015 to 2019. Previous studies by the Menzies MS team and others have shown the impacts of MS symptoms on work productivity. Nevertheless, the impact of work environment-related factors on work productivity has not been thoroughly investigated. The first study relating to Theme 1 (<b>Chapter 3</b>), which uses AMSLS data from 2015, aimed to quantify the impact of work-related factors, including work difficulties, work self-efficacy and work psychological safety, on MS-related work productivity loss. This included absenteeism (time absent from work), presenteeism (reduced productivity at work) and total work productivity loss (absenteeism plus presenteeism). The study found that a 10-unit decrease in workplace self-esteem, 10-unit increase in interpersonal difficulties at work, and 5-unit increase in work self-efficacy were associated with a 3.75% increase, 2.89% increase and 3.36% decrease in total work productivity loss, respectively. We found that the effects were partially mediated via MS symptom severity, with associations reducing when we adjusted for the severity of symptoms. The associations were stronger for those who had disclosed their MS status at work compared to those who had not disclosed. This highlights the need to empower PwMS by helping them develop the skills necessary to identify and communicate their needs effectively at workplace; assess and reduce the psychological effect of MS on their work; self-manage their MS symptoms; and assess and adjust their workload in order to maximise their work productivity.<br>While previous cross-sectional studies have highlighted the impacts of demographic factors, clinical factors, including MS symptoms, and work-related factors on employment outcomes for PwMS, no study has critically evaluated the trajectories of change and the intra-individual changes of work productivity in PwMS. Using annual work productivity data collected by the AMSLS from 2015 to 2019, we applied group-based trajectory modelling to identify work productivity trajectories in PwMS and the factors associated with the identified trajectories. This work is described in study two (<b>Chapter 4</b>). We identified three distinct work productivity trajectories, namely: ‘moderately reduced’ (17.0% of participants), who had a mean work productivity of 47.6% at the start of the trajectory; ‘mildly reduced’ (46.7% of participants), who had a mean productivity of 86.3% at the start of the trajectory; and ‘full’ (36.3% of participants), who had a mean work productivity of 99.7% at the start of the trajectory. The work productivity trajectories were stable over time but there were substantial individual variations over the four?year period, particularly for the ‘moderately reduced’ trajectory. Higher educational level, higher severity of MS symptoms, and higher disability were associated with belonging to the worse (‘moderately reduced’) work productivity trajectory. This highlights that interventions to empower PwMS to reduce the impact of MS symptoms may help those at risk of work productivity loss, which could assist them to remain at work for longer.<br>To gain a deeper understanding of work productivity among PwMS, after observing substantial individual variations in the work productivity trajectories, we performed a detailed investigation of the intra-individual changes of work productivity from one year to the next and the factors associated with the annual change in work productivity. This work is described in study three (<b>Chapter 5</b>). We found that the severity of MS symptoms was not associated with changes in work productivity. However, the variations (changes) in severity were associated with the individual changes in work productivity in the same year. The annual change in the symptom severity clusters ‘pain and sensory symptoms,’ ‘feelings of anxiety and depression,’ and ‘fatigue and cognitive symptoms’ were each independently associated with the annual change in work productivity. These results highlight importance of assisting PwMS to minimise both the severity and fluctuations of MS symptoms to improve work productivity.<br>Theme 2 of this thesis used data collected from studies associated with a six-week massive open online course, entitled “Understanding Multiple Sclerosis” (MS MOOC). The MS MOOC was developed by the Menzies Institute MS Research Flagship to increase awareness and understanding of MS, health literacy (HL), resilience, self-efficacy, and quality of life (QoL) by providing evidence-based information.<br>There are limited validated instruments to measure MS disease-related knowledge. Further, amongst the available validated instruments to measure MS disease-related knowledge, none is appropriate for assessing general MS knowledge among both people living with MS and those not living with MS. In study four (Chapter 7), we describe the development and validation of a simple and easy-to-use MS Knowledge Assessment Scale (MSKAS). The MSKAS was intended for use by the MS community and the general public to measure MS disease-related knowledge. We used the Delphi approach to develop the initial MSKAS of 42 yes/no items in consultation with experts from the MS community, examined the psychometric properties of the scale amongst MS MOOC participants, and generated the final 22-item MSKAS. The final MSKAS was found to be unidimensional (measuring only MS knowledge), valid, and reliable (reliability index of 0.82, with a minimum acceptable value of 0.7). The final MSKAS content covers MS biology, pathology, symptoms management, treatment options, risk factors, and prognosis around MS. The MSKAS is a valid and reliable tool that could be used by health practitioners and researchers around the world to measure general MS knowledge of English-speaking PwMS and the general public.<br>The MS MOOC aimed to increase HL. The Health Literacy Questionnaire (HLQ) is a well-validated HL instrument, but little is known about its measurement properties in online health education cohorts. In study five (<b>Chapter 8</b>), we determined whether the HLQ, is an appropriate tool to measure HL among MS MOOC participants. We found each of the nine dimensions of the HLQ to have good internal consistency and reliability. All 44 individual HLQ items were appropriate in measuring the HL construct they intended to measure, and reliable HL information could be obtained in our cohort using the HLQ. This implies the HLQ is a valid and reliable tool to measure the HL of MS community members in different settings, including online MS educational platforms.<br>In addition to HL, the MS MOOC also aimed to improve participants’ MS-related knowledge, resilience, self-efficacy, and QoL. The final study (<b>Chapter 9</b>) focused on assessing the impact of MS MOOC participation on MS-related knowledge, HL, resilience, self-efficacy, and QoL by comparing these measures before and after course participation. We found that course participation significantly increased MS-related knowledge for both PwMS (+2.13 points out of 22 possible points, p&lt;0.001) and those without MS (+5.16 points, p&lt;0.001). Having a higher education level (university degree and above) was associated with a larger increase in MS-related knowledge. For people not living with MS, two of the nine HL subscales (+2.0% and +2.5%) and QoL improved but the effect sizes were small, while no changes were observed in resilience or self-efficacy. For PwMS, seven of the nine HL subscales improved following participation (range from +1.4% to +3.5%), and self-efficacy for managing chronic disease (+4.1%) also improved, but again the effect sizes were small. No changes were observed in resilience, MS symptom severity, or QoL. Importantly, the changes in MS-related knowledge were not associated with the changes in other study outcomes. These findings showed that online education and accurate, concise information provision can significantly increase disease-related knowledge and HL, which are needed as a foundation for behaviour change and empowerment. The fact that increases in knowledge were not associated with changes in other health outcomes highlights that outcome-specific behavioural change interventions may be needed to impact these outcomes.<br>The findings of Theme 1 of my PhD thesis suggest that PwMS may need the assistance of a multidisciplinary care team to empower them to remain in paid employment. Such a care team might assist PwMS in developing self-management skills around symptoms, skills to effectively communicate their needs at workplace, skills to assess and minimise the psychological impact of MS on work, and skills to assess their work demands and how to modify them. Such work-specific information and education could also be converted to a digital intervention similar to the MS MOOC. The findings of Theme 2 suggest that online education and information provision provides an opportunity to increase MS-related knowledge and HL, but that an educational intervention alone is not sufficient to effect behaviour change unless combined with an outcome-specific behavioural change interventions designed for that purpose. [continued]......