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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 prevalenc...
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Objectives
Caregivers of those with neurodegenerative disease (ND) manage complex symptoms which impact their wellbeing. Self-compassion can promote maintenance of wellbeing during challenging experiences, including caregiving. Little guidance exists for observationally studying self-compassion or targeted interventions for this population. Our obj...
Citations
... The job classification was also not assessed in the study. A recent study reported that the use of DMD was positively associated with employment status in people with MS, 24 however, the correlation between DMD and employment status was not determined in this study. People with MS had worse occupational outcomes during Covid-19 pandemic, 25 but this study has not examined the impact of covid-19 on employment in patients with MS. ...
Aims
We conducted a questionnaire survey on Japanese MS patients to determine the relationship of fatigue, depression, and physical activity limitations with employment status.
Materials and methods
The study was conducted to assess the Patient Reported Outcome of MS patients treated with disease-modifying drug ≥6 months by recruiting MS patients from a web-based patient panel. Multiple regression analysis was performed by using items described in the Work Productivity and Activity Impairment Questionnaire-General Health Version 2.0 (WPAI-GH) and Fatigue Severity Scale (FSS), Quick Inventory of Depressive Symptomatology (Self-Report) (QIDS-SR), and Patient Determined Disease Step (PDDS).
Results
Employment rates decreased after MS development and were more pronounced in the group with advanced physical disability with PDDS score ≥ 3. Health-related activity limitations were higher with advanced disability. In the analysis of the five subdomains of WPAI-GH by FSS score, the domains “due to health reasons,” “disability rates during work,” “overall work disability among the employed,” and “health-related limitations’ all increased with higher FSS scores.” In WPAI-GH by QIDS-SR, the work disability rate was higher in the depressed group than in the normal group, and health-related activity limitations increased with greater depression.
Limitations
This is a cross-sectional survey and data are based on PRO, hence are subjective and are collected based on patients’ overall responses. Some bias could be attributed to memory and literacy rates as this is an online survey.
Conclusions
The results suggested that the onset of MS prevented patients from working and forced them to resign from their jobs or give up full-time work. The rate of employment tended to be lower in the group with advanced limitations; suggesting that controlling the progression of limitations may lead to lower turnover, and the rate of health-related activity limitations was correlated with the degree of physical activity limitations, depression, and fatigue, respectively.
... It comes to light that a multidisciplinary approach can help manage the interaction between the impairments caused by MS, the physical environment, and the job demands [19]. A literature review also shows that in the last years, even though still prevalent in WwMS, unemployment and early retirement have slightly decreased [20]. ...
... In this regard, the aspects of the work identified as the basis of the challenges faced by OPs are also in line with the literature. They are mainly attributable to the working posture, job rotation, working hours, and the type of risk present [18][19][20][21][27][28][29][30][31]. ...
... As emerged from this survey, there is a clear need for updating on MS matters, primarily referring to the profiling of the fitness for work of the WwMS for job retention. These results, together with further inputs from the PRISMA project [17][18][19][20], strengthen the opportunity for the availability of guidelines or, in any case, operational protocols on the subject, which are of significant usefulness for the OP. It is therefore believed that SIML's recent initiative to set up a working group on MS and work with a multi-and interdisciplinary approach favors the preparation of guidelines -starting from the update of the 2013 document -with the aim to supporting the work of the OP in his complex role of "global consultant". ...
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.
... The uncertainty of the pandemic, changes in employment, and working conditions may have longer-term impacts as the pandemic has already accentuated pre-existing labour market inequalities and heightened the risk of exclusion among many [28]. Therefore, the recent trend of progress in improving work outcomes among PwMS may be reversed [8,49]. ...
Background
The COVID-19 pandemic led to vast changes in working life and conditions in which we work. These changes may affect people with multiple sclerosis (PwMS) differently. We aimed to describe the working situation of PwMS during the COVID-19 pandemic and the pandemic’s impact on their working lives.
Methods
All individuals aged 20–50 listed in the Swedish Multiple Sclerosis Registry were invited to participate in an online survey in 2021. Closed and open-ended responses linked to individual-level register data were used in this exploratory mixed-methods study. Differences in the proportions reporting specific impacts were assessed with chi-square tests by sex, MS severity, education, and profession. The open-ended answers were analysed through content analysis.
Results
Over 8500 PwMS were invited (52% response rate). We included the 3887 respondents who answered questions about the impact of the pandemic on working life. Most (93.7%) reported being in paid work. An impact of the ongoing pandemic to one’s daily occupation was reported by 26.2%, with different characteristics observed across the impacts. Four categories of type of answers were identified from the open-ended answers: Direct impact on one’s occupation, Disclosing or concealing MS in the workplace, Worry and uncertainty, and Broader impact to life situation.
Conclusions
PwMS navigated the pandemic by interrupting as well as continuing their working lives. Many PwMS reported that the pandemic did not affect their work situation. However, the reported impacts differed among the participants and a sense of uncertainty and worry was often underlying their statements. Lessons from the pandemic may support future work participation.
... We found that most retirements in PwMS (96.2%) were due to permanent disability resulting from MS. Other studies highlighted high rates of early retirement due to MS (e.g., Vitturi et al. 2022), emphasizing the contribution of the neuropsychological symptoms (Rommer et al. 2019), and psychiatric disorders (Vitturi et al. 2022) to early retirement. These data from the current and recent studies highlight the challenge that MS represents for public health and society, due to its negative impact on the quality of life of patients (Heinonen et al. 2020) and the associated economic and social burden (Kobelt et al. 2006), despite the decrease in the last decades of MS patients who retired early, mainly as a result of the evolution of treatments (Heinonen et al. 2020;Vitturi et al. 2022). ...
... We found that most retirements in PwMS (96.2%) were due to permanent disability resulting from MS. Other studies highlighted high rates of early retirement due to MS (e.g., Vitturi et al. 2022), emphasizing the contribution of the neuropsychological symptoms (Rommer et al. 2019), and psychiatric disorders (Vitturi et al. 2022) to early retirement. These data from the current and recent studies highlight the challenge that MS represents for public health and society, due to its negative impact on the quality of life of patients (Heinonen et al. 2020) and the associated economic and social burden (Kobelt et al. 2006), despite the decrease in the last decades of MS patients who retired early, mainly as a result of the evolution of treatments (Heinonen et al. 2020;Vitturi et al. 2022). ...
... Other studies highlighted high rates of early retirement due to MS (e.g., Vitturi et al. 2022), emphasizing the contribution of the neuropsychological symptoms (Rommer et al. 2019), and psychiatric disorders (Vitturi et al. 2022) to early retirement. These data from the current and recent studies highlight the challenge that MS represents for public health and society, due to its negative impact on the quality of life of patients (Heinonen et al. 2020) and the associated economic and social burden (Kobelt et al. 2006), despite the decrease in the last decades of MS patients who retired early, mainly as a result of the evolution of treatments (Heinonen et al. 2020;Vitturi et al. 2022). ...
Background: Multiple sclerosis (MS)-linked stress is frequent, multidetermined, and facilitates the onset/exacerbation of MS. However, few explanatory models of stress analyzed the joint explanatory effect of emotion regulation and clinical outcomes of MS in those patients.
Objective: This study explored whether self-reported
MS-related conditions (number of relapses, fatigue, and global disability) and specific emotion regulation processes (experiential avoidance and self-compassion) explain stress symptoms in MS patients.
Methods: The MS sample comprised 101 patients with MS diagnosis receiving treatment in hospitals and recruited through the
Portuguese MS Society. The no-MS sample included 134 age-,
sex-and years of education-matched adults without MS recruited
from the general Portuguese population. Both samples did not report other neurological disorders. Data were collected using
self-response measures.
Results: All potential explanatory variables differed significantly between samples, with higher scores found in MS patients.
In MS clinical sample, those variables and years of education correlated with stress symptoms and predicted stress symptoms in simple linear regression models. These results allowed their selection as covariates in a multiple linear regression model. Years
of education, the number of relapses, fatigue and experiential avoidance significantly predicted 51% of stress symptoms' total
variance.
Conclusions: This study provides preliminary evidence on the importance of clinicians and researchers considering the simultaneous contribution of years of education, the number of perceived relapses, fatigue and experiential avoidance as factors that can increase vulnerability to stress in MS patients. Psychological intervention programmes that tackle these factors and associated stress symptomatology should be implemented.
... 14 A recent systematic review also showed an overall decrease in the prevalence of unemployment among PwMS, attributed partly to the use of DMTs which was more pronounced since 2010, when the number of high-efficacy DMTs started to increase. 15 There is limited literature on the long-term DMT use trends and corresponding work disability measured with SADP days. In a recent register-based study, we assessed the trajectories of DMT use over 10 years from MS onset, using sequence analysis. ...
Background
Disease-modifying therapies (DMTs) have led to improved health and work productivity among people with multiple sclerosis (PwMS).
Objectives
To describe trajectories of recent DMT use and their association with sickness absence and/or disability pension (SADP) among PwMS in Sweden.
Methods
A longitudinal register–based study was conducted among 1395 PwMS with treatment start in 2014/2015. While DMT use over 5 years was assessed using sequence analysis resulting in four clusters, a 7-year (Y−2 toY4) trend of SADP was analyzed using zero-inflated negative binomial regression.
Results
Four clusters of DMT use trajectories were identified: long-term non-high-efficacy (483, 34.6%), long-term high-efficacy (572, 41%), escalation (221, 15.8%), and discontinuation (119, 8.5%). Progressive MS and higher expanded disability status scale scores were associated with the escalation, long-term high-efficacy, or discontinuation clusters. PwMS in the long-term high-efficacy and escalation clusters had higher likelihood of being on SADP. However, PwMS initiating high-efficacy DMTs demonstrated steeper decline in SADP than others.
Conclusion
Using sequence analysis, this study showed recent DMT use trajectories among PwMS where initiation of high-efficacy DMTs has become more common. The trend of SADP was stable and lower in those using non-high-efficacy DMTs and larger improvements were shown in those initiating high-efficacy DMTs.
... Similarly, PwMS usually require several types of reasonable accommodations to promote the maximum integration of the worker into the workplace (10). PwMS have higher rates of unemployment and early retirement (11). Indeed, studies showed that once unemployed, this group of patients is unlikely to return to the workforce (12). ...
... Undoubtedly, this finding confirms the vulnerability of this special group of patients to unfavorable occupational outcomes. Nevertheless, this finding is comparable to the estimates of the prevalence of unemployment and early retirement in the 40 years before the outbreak (11). This observation may be explained by the implementation and effectiveness of reasonable job accommodations for PwMS. ...
Background
People with Multiple Sclerosis (PwMS) are vulnerable to unfavorable occupational outcomes and the COVID-19 pandemic brought major consequences on people’s professional lives. In this view, we decided to investigate the occupational outcomes of PwMS during the COVID-19 pandemic.
Methods
We performed a systematic review with meta-analysis searching key terms in four databases. We initially included any peer-reviewed original article that enrolled adult patients with the diagnosis of MS and assessed any occupational variable during the COVID-19 pandemic. There were no time limits and no language restrictions. The primary outcomes were the prevalence of unemployment, retirement and employment status change among people with MS during the COVID-19 pandemic. Other outcomes included the modality and characteristics of work: type of work, full-time work, part-time work and remote work. We also searched for data from studies that addressed any change in the work status due to the COVID-19 outbreak.
Results
We identified 49 eligible articles comprising a total sample size of 17,364 individuals with MS. The pooled prevalence of unemployment and retirement was 0.47 (95% CI = 0.42–0.53). The pooled prevalence of PwMS who were unemployed or retired was positively associated with the progressive phenotype of the disease (p = 0.017) and the use of glatiramer acetate (p = 0.004), but negatively associated with hospitalization due to COVID-19 (p = 0.008) and the use of immunosuppressants (p = 0.032), siponimod (p < 0.001), and cladribine (p = 0.021). The pooled proportion of PwMS that reported any change of the employment status during the COVID-19 pandemic was 0.43 (95% CI = 0.36–0.50) while the pooled prevalence of PwMS who worked remotely during this period was 0.37 (95% CI = 0.15–0.58). The change in employment status was negatively associated with the duration of MS (p = 0.03) but positively associated with the progressive phenotype of the disease (p < 0.001).
Conclusion
Our seminal review may serve as an example of how patients with neurological diseases or disabilities in general may have their jobs impacted in a pandemic and foster the context of global socio-economic crisis.
... Its incidence has been increasing globally every year since 2013, making it a subject of great public health concern (4). MS is one of the main causes of disability among young workers and it is associated with devastating socioeconomic and occupational outcomes (5,6). ...
Objective
We decided to conduct the first systematic review with meta-analysis to provide the highest level of up-to-date evidence on the occupational risk factors for Multiple Sclerosis.
Methods
A systematic, comprehensive literature search was performed in four electronic academic databases. We included any case-control study that enrolled working-age subjects and compared the proportion of MS cases with controls who were not exposed to an occupational risk factor. The primary outcome was the occurrence of MS. The quality assessment was performed with the Critical Appraisal Checklist for Case Control Studies, developed, and validated by the Joanna Briggs Institute. All the selection process was also carried out by two independent and previously trained researchers.
Results
Overall, the total sample included 19,004 people with MS and 4,164,162 controls. Agricultural workers (OR = 1.44, 95% CI 1.13–1.83), offshore workers (OR = 3.56, 95% CI 2.74–4.61), and hairdressers (OR = 8.25, 95% CI 1.02–66.52) were associated with a higher probability of being diagnosed with MS. In parallel, workers exposed to toxic fumes from oil wells (OR = 16.80, 95% CI 8.33–33.90), low-frequency magnetic fields (OR = 1.71, 95% CI 1.03–2.72), and pesticides (OR = 3.17, 95% CI = 2.53–3.99) also had an increased likelihood of having MS.
Conclusion
Our study has the potential to influence more assertive public policies. Nevertheless, future studies on how the occupational setting may contribute to the incidence of MS are highly recommended.
Systematic review registration
The protocol was registered in the international prospective register of systematic reviews (PROSPERO– CRD42023443257).
... 5 Even though there is some variability across countries and, in the last years, the proportion of unemployed pwMS has decreased (potentially related to advances in disease-modifying therapy (DMT)), pooled estimates for unemployment and early retirement remain 35.6% and 17.2%, respectively. 6 Furthermore, many pwMS that are still working experience substantial productivity losses even at low severity levels, as reported in our previous study in Canada, which showed an estimated 60 hours of productivity lost among employed pwMS during a The relationship among demographic, clinical, physical, and cognitive impairment factors and employment and work-related outcomes (including employment status, working hours, and productivity loss) have been studied previously. 8,9 However, with a few exceptions, 10-12 a comprehensive set of factors have not been investigated conjointly and compared across several employment and work-related outcomes. ...
... Overall, the unemployment rate of 25% found in this cohort is below the pooled estimate of 35% provided by a recent meta-analysis, 6 which is likely explained by the lower severity of disability and shorter disease duration for participants in the CanProCo cohort, as well as the regional and temporal differences also outlined in the meta-analysis. As for productivity loss among the employed, results are consistent with those from our previously published study in a CanProCo sub-cohort. ...
Background
Multiple Sclerosis (MS) affects people in their most productive years of life. Consequently, MS can substantially affect employment and work-related outcomes.
Objectives
This study characterizes productivity loss and employment status of people with multiple sclerosis (pwMS) and investigates associated factors.
Methods
We used baseline data collected as part of the Canadian Prospective Cohort Study to Understand Progression in Multiple Sclerosis (CanProCo). Using the Valuation of Lost Productivity questionnaire, we measured MS-related paid work productivity loss for those employed, productivity losses incurred by those unemployed (i.e. lost employment time), and unpaid work productivity losses for all. A set of sociodemographic, disease, and performance-related factors were investigated using a two-part regression model for productivity loss and a multinomial logistic model for employment status.
Results
From the cohort of 888 pwMS enrolled at baseline (mostly showing mild to moderate disability), 75% were employed, and of those unemployed, 69% attributed their unemployment to health-related issues. Total productivity loss over a 3-month period averaged 64 and 395 hours for those employed and unemployed, respectively. Some factors that affected productivity loss and employment status included use of disease-modifying therapies, fatigue, and performance indicators such as cognitive processing speed.
Conclusion
Productivity loss experienced by employed and unemployed pwMS is substantial. Targeting the identified modifiable factors is likely to improve work productivity and permanence of MS patients in the workforce.
... This reality imposes a complexity in the role of the physician and healthcare professionals in promoting the occupational outcomes of PwMS. The attending physician, in a multidisciplinary environment, must identify potential barriers in a personalized and individual way, taking into account both the characteristics of the disease and the work [65,66]. As we have identified in the literature, most workers rely on the occupational physician to make this analysis and coordinate the process of integrating the worker to work [29,54]. ...
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.
... We found that most retirements in PwMS (96.2%) were due to permanent disability resulting from MS. Other studies highlighted high rates of early retirement due to MS (e.g., Vitturi et al. 2022), emphasizing the contribution of the neuropsychological symptoms (Rommer et al. 2019), and psychiatric disorders (Vitturi et al. 2022) to early retirement. These data from the current and recent studies highlight the challenge that MS represents for public health and society, due to its negative impact on the quality of life of patients (Heinonen et al. 2020) and the associated economic and social burden (Kobelt et al. 2006), despite the decrease in the last decades of MS patients who retired early, mainly as a result of the evolution of treatments (Heinonen et al. 2020;Vitturi et al. 2022). ...
... We found that most retirements in PwMS (96.2%) were due to permanent disability resulting from MS. Other studies highlighted high rates of early retirement due to MS (e.g., Vitturi et al. 2022), emphasizing the contribution of the neuropsychological symptoms (Rommer et al. 2019), and psychiatric disorders (Vitturi et al. 2022) to early retirement. These data from the current and recent studies highlight the challenge that MS represents for public health and society, due to its negative impact on the quality of life of patients (Heinonen et al. 2020) and the associated economic and social burden (Kobelt et al. 2006), despite the decrease in the last decades of MS patients who retired early, mainly as a result of the evolution of treatments (Heinonen et al. 2020;Vitturi et al. 2022). ...
... Other studies highlighted high rates of early retirement due to MS (e.g., Vitturi et al. 2022), emphasizing the contribution of the neuropsychological symptoms (Rommer et al. 2019), and psychiatric disorders (Vitturi et al. 2022) to early retirement. These data from the current and recent studies highlight the challenge that MS represents for public health and society, due to its negative impact on the quality of life of patients (Heinonen et al. 2020) and the associated economic and social burden (Kobelt et al. 2006), despite the decrease in the last decades of MS patients who retired early, mainly as a result of the evolution of treatments (Heinonen et al. 2020;Vitturi et al. 2022). ...
