Job Retention by People With Disabilities: A Qualitative Study of the Perspectives of People With Multiple Sclerosis.

BACKGROUND: Multiple sclerosis (MS), because of its early age at onset, greatly impacts the working lives of those affected by it in ways linked to different factors, both professional and personal. It has been observed that only a small percentage (20-40%) of workers with MS retain their jobs after the diagnosis. When identifying factors determining job retention or loss in this setting, it is essential to consider the direct perspectives of people with MS (PwMS). METHODS: A qualitative study, based on the conduction of two focus groups, was conducted to explore the personal experiences of PwMS who work. RESULTS: The results show that there are numerous factors, both positive and negative, that can influence these people's ability to retain their jobs. The climate established in the workplace and the relationship between workers with MS and their colleagues were fundamentally important aspects, as was knowledge of the disease at the level of public opinion. CONCLUSIONS: Managing work is a complex undertaking for people with a disabling condition like MS. There needs to be greater awareness of the employment rights of PwMS. Improving these knowledge-based aspects could undoubtedly improve the quality of the working lives of PwM.

Occupational Physicians' Management of Workers With Multiple Sclerosis in Italy: Results From a Survey.

BACKGROUND: This study, conducted on a sample of Italian occupational physicians (OPs), aimed to gather data regarding professional activity and their needs in managing workers with multiple sclerosis. METHODS: A convenience sample of OPs recruited by e-mail invitation to the list of Italian Society of Occupational Medicine members was considered. A total of 220 OPs participated between July and October 2022. An ad hoc questionnaire was developed based on previous survey experiences. It investigated, among others, the characteristics of OP respondents, the evaluation of fitness for work issues, and the OP training and updating needs on multiple sclerosis and work. RESULTS: Ninety-one percent of OPs had to assess the fitness for work of workers with multiple sclerosis during their activity. Sixty-four percent experienced particular difficulties in issuing a fitness for work judgment. Regarding the level of knowledge on multiple sclerosis, 54% judged it sufficient. The "Assessment of fitness for work for the specific task" and the "Role of the OPs in identifying reasonable accommodations" were the most interesting training topics regarding MS management in work contexts chosen by the respondents. CONCLUSIONS: The interest in the work inclusion and job retention of people with disability, particularly the aspects linked to the Identification and implementation of reasonable accommodations, will require integration with the occupational safety and health protection system and will undoubtedly impact the OP's activities.

Work Difficulties in People with Multiple Sclerosis.

PURPOSE: This study identifies potential predictors of unemployment and describes specific work difficulties and their determinants in a subgroup of employed people with multiple sclerosis (PwMS). The specific work difficulties were evaluated using a validated tool that measures the impact of respondents' symptoms and of workplace features. METHODS: A cross-sectional study was carried out in Italy during 2021-2022. The subjects included were adults (18-65 years) with a diagnosis of MS, currently employed or unemployed. Logistic regression models were used to determine the association between each potential determinant and employment status, while linear regression models were used to determine the association between determinants and specific work difficulties. RESULTS: The main risk factors associated with a higher risk of being unemployed were being older, living in the South of Italy/islands, and having a higher disability level, while protective factors against unemployment were having a high level of education and 'stable' employment (an open-ended contract). Fatigue was found to be associated with all work difficulties analyzed; mood disorders emerged as the main predictors of mental health-related work difficulties; level of disability and comorbidity significantly impacted physical health-related ones, and a good quality of life was found to improve both workplace-related and mental health-related difficulties at work. CONCLUSION: Identifying the most significant difficulties is a crucial step in the development of vocational rehabilitation interventions tailored to maximize the ability of PwMS to handle their job-related duties and demands.

Work Barriers and Job Adjustments of People with Multiple Sclerosis: A Systematic Review.

Purpose The aim was to carry out a systematic review dedicated to describing the work barriers and the job adjustments that are particularly sensitive to people with Multiple Sclerosis (PwMS). Methods Four electronic databases (PubMed/MEDLINE, Scopus, SciVerse ScienceDirect, and Web of Science) were searched for peer-reviewed original articles reporting the barriers at work and/or the job adjustments used by PwMS. MS must have been diagnosed according to accepted international criteria at the time of the study and/or confirmed by a doctor. No time limits were set for the search. Articles that were published in English, Italian, Spanish, French, and Portuguese were accepted. Each article was screened by three experienced and trained investigators. The protocol was registered in PROSPERO (CRD42022299994). Results The initial systematic search yielded 104,228 results, of which 49 articles provided sufficient information and were considered suitable for inclusion in the study. Overall, the studies included 30283 participants with MS. Thirteen (27.1%) studies reported on barriers to work, 14 (29.2%) addressed reasonable adjustments and 21 (43.7%) assessed both outcomes. Job characteristics are the most important barriers for PwMS. Other reported barriers concern the work environment, social relationships at work, negative work events and lack of information. PwMS are more vulnerable to the need for adjustments at the workplace, being the management of the workload the most commonly used one. Conclusions PwMS are exposed to a wide variety of work barriers and job adjustments. Future studies are still highly encouraged on the topic.

Occupational outcomes of people with multiple sclerosis: a scoping review.

OBJECTIVES: To update the knowledge on the occupational outcomes associated with multiple sclerosis (MS), systematically examine the extent, scope and nature of the pre-existing literature and identify research gaps in the existing literature. DESIGN: Scoping review. DATA SOURCES: A comprehensive database search of PubMed/MEDLINE, Scopus, SciVerse ScienceDirect and Web of Science was performed. There were no time limits. ELIGIBILITY CRITERIA: We included any peer-reviewed original article reporting the occupational outcomes of people with MS between the ages of 18 and 65 years. We excluded those off-topic and with insufficient information. METHODS: This review was conducted following the Joanna Briggs Institute recommendations and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses for scoping review checklist. Screening, reading of full-texts and data extraction was performed in a standardised way by expert reviewers from 14 July 2021 to 31 October 2021. We provided a narrative synthesis and an overview of findings. RESULTS: The initial systematic search yielded 104 228 results. After removing duplicates and applying the exclusion criteria, 403 articles were included in the review. In total, the studies evaluated 492 062 subjects with MS. One hundred fifty-four (38.2%) articles were published in the last 5 years, mostly from Europe and North America (50.9% and 33.0%, respectively). Concerning the occupational outcomes, studies mostly addressed unemployment (311, 77.2%), early retirement (120, 29.8%), disability pension (117, 29.0%), sick leave (77, 19.1%), the indirect cost of MS (74, 18.4%) and work characteristics (57, 14.1%). The results were categorised into seven subtopics: 'Changes in work and occupational status due to MS', 'work-related socio-economic consequences of MS', 'risk factors for unfavourable occupational outcomes', 'reported barriers to employment', 'reported job accommodations and vocational rehabilitation strategies', 'job satisfaction, stigma, and disclosing the diagnosis in the workplace' and 'rating clinical scales'. CONCLUSIONS: There are several issues that deserve further in-depth study by the scientific community in order to improve the occupational outcomes of people with MS.

Stigma, Discrimination and Disclosure of the Diagnosis of Multiple Sclerosis in the Workplace: A Systematic Review.

The objective of the study was to describe and analyze the stigma, discrimination and the disclosure of the diagnosis of Multiple Sclerosis (MS) in the workplace. The protocol was registered in PROSPERO (CRD42022320437). We systematically searched four scientific databases with key search terms. We included any original peer-reviewed articles reporting the stigma or discrimination experienced at work due to MS or the disclosure of the diagnosis of MS in the workplace. No time limits were set for the search. An appraisal of the individual study quality was performed with the JBI critical appraisal checklist. Overall, 26 studies were deemed to fulfil all the eligibility criteria. The total number of participants in this review was 9571. The prevalence of people with MS who experience some degree of stigma in the workplace can be as high as 79.2%. Those who report greater feelings of discrimination are more likely to be unemployed. The prevalence of employers' and co-workers' awareness of the diagnosis varies from 31.7 to 90.2%. The main reason for non-disclosure is the fear of being discriminated against. The psychosocial work environment needs to be taken into consideration as part of public and individual policies to promote the health of patients with MS.

Spatial and temporal distribution of the prevalence of unemployment and early retirement in people with multiple sclerosis: A systematic review with meta-analysis.

BACKGROUND: We aimed to summarise the prevalence of unemployment and early retirement among people with MS and analyze data according to a spatio-temporal perspective. METHODS: We undertook a systematic search of PubMed/MEDLINE, Scopus, SciVerse ScienceDirect, and Web of Science. We included any peer-reviewed original article reporting the prevalence of unemployment and early retirement in the working-age population with MS. We excluded articles off-topic, with other study designs, whose study sample were unlikely to be representative of the MS population and in case of unavailability of the full text or essential information. A random-effects meta-analysis was used to measure overall prevalence estimates of unemployment and early retirement. We used meta-regression and subgroup analysis to evaluate potential moderators of prevalence estimates and the leave-one-out method for sensitivity analyses. RESULTS: Our research identified 153 studies across 29 countries encompassing 188436 subjects with MS. The pooled overall effect size for unemployment and early retirement was 35.6% (95% CI 32.8-38.4; I2 = 99.31) and 17.2% (95% CI 14.6-20.2; I2 = 99.13), respectively. The prevalence of unemployment varied according to the year of publication (p < 0.001) and there was a statistically significant decrease in the prevalence of unemployment over time (p = 0.042). Regarding early retirement, only seven (31.8%) estimates obtained from studies that were published before 2010 were below the overall effect size in comparison to 27 (60.0%) estimates extracted from data published between 2010 and 2021 (p = 0.039). There was a significant difference in prevalence according to countries (p < 0.001). Psychiatric illness was an important clinical feature responsible for patients leaving the workforce in regions with a high MS prevalence. CONCLUSIONS: Unemployment and early retirement due to MS remain highly prevalent, despite a slight decline in the last decade. The prevalence of unemployment and early retirement varies globally.

Impact of the COVID-19 pandemic on persons with multiple sclerosis: Early findings from a survey on disruptions in care and self-reported outcomes.

OBJECTIVE: To describe the disruptions in care experienced by persons with Multiple Sclerosis in Italy due to the COVID-19 pandemic and the self-reported impact on their health and wellbeing. METHODS: A cross-sectional online survey was completed by 2722 persons with Multiple Sclerosis, after Italy instituted a national lockdown in response to the pandemic. RESULTS: Persons with Multiple Sclerosis reported that the pandemic caused broad disruptions to usual health and social care services, which impacted on their health and wellbeing. Disruptions in care were consistently associated with negative self-reported impacts on the expected progression of the disease, on out-of-pocket expenditure and on carer's stress. Psychological consequences were associated with interruption to usual psychological support, and concerns about the safety of care delivered in person. CONCLUSIONS: The quality of life of persons with Multiple Sclerosis depends greatly on prompt access to a broad range of health and care services. Negative psychological impacts reported by persons with Multiple Sclerosis with less severe disabilities show that accessible integrated services are crucial for maintenance of their wellbeing. Most persons with Multiple Sclerosis with more severe disability experienced negative impacts on perceived health. Their carers compensating for lack of social input resulted in care overburden. As continuity of care is crucial for persons with Multiple Sclerosis, as well as for persons with chronic conditions in general, strategies must be in place to ensure it is included in future pandemic response plans.