Research project
MS@Work study
Predictors of work functioning in persons with multiple sclerosis
- Contact
- Karin van der Hiele
- Funding
- National Multiple Sclerosis Foundation
-
Teva Pharma Nederland
-
ZonMw TopZorg (TOP Grant, project number: 842003003)
- Partners
National Multiple Sclerosis Foundation
Elisabeth-TweeSteden Hospital Tilburg
University of Humanistic studies
MS4 Research Institute
Multiple Sclerosis (MS) is the most common cause of neurological disability in young and middle-aged adults. At this stage in life most people are at the beginning or in the midst of their working career. Despite a recent work history, many people with MS as many as 55-58% of people with MS are unable to retain employment following diagnosis.
Work participation is very important for a person’s sense of self-respect, leading to financial security, social contacts and providing a feeling of usefulness and satisfaction. From a societal perspective, the loss of productivity in MS leads to significant socio-economic costs. The high prevalence of unemployment among patients with MS and the large personal and societal costs involved underline the need to study factors associated with unemployment and occupational functioning in MS. These involve a complex interaction between disease-related factors, the working environment, job demands and personal factors. This website features our research into occupational functioning in people with MS, the MS@Work study and eCoaching@Work for MS.
Also see
Pillar: Diagnostics and treatments
Pillar: Evaluation and implementation
Topic: Work and Health
Research Group
We work together with MS neurologists, rehabilitation specialists and neuropsychologists working for Dutch universities and hospitals. The core research team consists of Dr. K. van der Hiele, Prof. Dr. L.H. Visser, Prof. Dr. H.A.M. Middelkoop, D.A.M. van Gorp, MSc and E.E.A. van Egmond, MSc.
- Dr. K. van der Hiele, Leiden University, assistant professor in neuropsychology
Karin Van der Hiele - Prof. L. H. Visser, University of Humanistic studies and Elisabeth-TweeSteden Hospital, professor by special appointment in care ethics
Leo H Visser (researchgate.net) - Prof. Dr. H.A.M. Middelkoop, Leiden University and Leiden University Medical Centre, professor in clinical neuropsychology
Huub Middelkoop (researchgate.net) - D.A.M. van Gorp, MSc, University of Humanistic studies, PhD student
Dennis van Gorp (researchgate.net) - E.E.A. van Egmond, MSc, University of Humanistic studies, PhD student
Elianne van Egmond - Leiden University (universiteitleiden.nl)
Project team
- Dr. P.J. Jongen, MS4Research Institute, neurologist and researcher
MS4 Research Institute - Dr. P.J. Jongen (ms4ri.nl) - Prof. M.F. Reneman, University of Groningen, professor in pain rehabilitation and work participation
Michiel F Reneman (researchgate.net)
prof. M.F. (Michiel) Reneman | University of Groningen (rug.nl) - Prof. J.L.L. van der Klink, Tilburg University and Optentia, North West University of South Africa, professor emeritus in mental health at work and sustainable employability
Jac J L Van Der Klink (researchgate.net)
prof. Jac van der Klink | Tilburg University - M.A.P. Heerings, MA, Radboud University Medical Center, PhD student
Marco Heerings (researchgate.net)
MS outpatient clinics
- Alrijne Hospital Leiden, Department of Neurology, Leiden, The Netherlands
- Albert Schweitzer Hospital, Department of Neurology, Dordrecht, the Netherlands
- Amphia Hospital, Department of Neurology, Breda, The Netherlands
- Canisius-Wilhelmina Hospital, Department of Neurology, Nijmegen, The Netherlands
- Catharina Hospital, Department of Neurology, Eindhoven, The Netherlands
- Elisabeth-TweeSteden Hospital, Department of Neurology, Tilburg, The Netherlands
- Groene Hart Hospital, Department of Neurology, Gouda, The Netherlands
- Jeroen Bosch Hospital, Department of Neurology, ’s-Hertogenbosch, The Netherlands
- Maasstad Hospital, Department of Neurology, Rotterdam, The Netherlands
- Medical Centre Leeuwarden, Department of Neurology, Leeuwarden, The Netherlands
- Northwest Clinics, Department of Neurology, Alkmaar, The Netherlands
- Rijnstate Hospital, Department of Neurology, Arnhem, The Netherlands
- St. Anna Hospital, Department of Neurology, Geldrop, The Netherlands
- St. Antonius Hospital, Department of Neurology, Nieuwegein, The Netherlands
- VieCuri, Department of Neurology, Venlo, The Netherlands
- Zuyderland Medical Centre, Department of Neurology, Sittard-Geleen, The Netherlands
Study
The MS@Work study aims to examine predictors of (changes in) employment status and work functioning in patients with relapsing-remitting MS and healthy controls over a period of three years. By taking into account a wide variety of physical, cognitive and psychological factors this study aims to reveal typical patterns leading to, or protecting against job loss. Identifying these patterns provides useful information about preventative factors for physicians, psychologists and vocational rehabilitation therapists.
Results
The results of the MS@Work study:
2022
Personality traits are not associated with changes in employment status over 3 years in persons with multiple sclerosis.
Previous research discovered a protective effect of higher conscientiousness against a 3-year deterioration in employment status in persons with multiple sclerosis (pwMS). To replicate these findings, we used data from a multicentre prospective cohort study where 145 employed pwMS completed questionnaires, neurological and neuropsychological examinations at baseline and after 3 years. A 3-year deterioration in employment status was reported in 31.0%. We observed no differences in personality, demographics or clinical characteristics between pwMS with deteriorated or stable employment status. These null findings may be partly explained by the classification of deteriorated employment status, which does not reflect Dutch labour conditions.
Subjective cognitive impairment is related to work status in people with multiple sclerosis
Background: Unemployment is common among people with multiple sclerosis (pwMS) and has been associated with subjective cognitive difficulties, specifically in memory, attention, and executive functioning. However, longitudinal research on subjective cognitive difficulties and employment is scarce.
Objective: We investigated whether subjective cognitive impairment (SCI), based on the clinical cut-off score of the MS Neuropsychological Screening Questionnaire (MSNQ), was associated with work status and negative work events (NWE) at baseline and after 2 years. Moreover, we investigated whether four MSNQ subdomains were related to work status and NWE.
Methods: 287 participants (77.4% female, median age = 42 years) completed questionnaires on subjective cognitive functioning, depression, anxiety, and fatigue, and completed the Symbol Digit Modalities Test (SDMT). After baseline comparisons, logistic regression analyses were performed, with work status and NWE at baseline, and employment change and NWE change within 2 years after baseline as dependent variables. Independent variables included SCI and the MSNQ domains. Covariates anxiety, depression, fatigue, and SDMT were added.
Results: SCI, depression and anxiety were associated with work status (Nagelkerke R2 = .286), but only SCI was associated with employment change (Nagelkerke R2 = .164). No predictors were associated with NWE at baseline or follow-up. In addition, no MSNQ subdomain was related to work status, employment change or NWE.
Conclusion: Unemployed pwMS and pwMS with a deteriorated work status reported more cognitive difficulties after 2 years than employed pwMS or pwMS with a stable work status. In addition, depression, and anxiety were associated with work status.
Work difficulties in people with multiple sclerosis: the role of anxiety, depression and coping
Background: Symptoms of anxiety and depression affect the daily life of people with multiple sclerosis (MS). This study examined work difficulties and their relationship with anxiety, depression and coping style in people with MS.
Methods: 219 employed people with MS (median age = 43 years, 79% female) completed questionnaires on anxiety, depression, coping style, demographics and work difficulties, and underwent a neurological examination. Two regression analyses were performed with work difficulties as the dependent variable and either anxiety or depression as continuous independent variables. Coping style, age, gender, educa[1]tional level, MS-related disability and disease duration were added as additional predictors, as well as inter[1]action terms between coping style and either symptoms of depression or anxiety.
Results: A significant model was found (F(10,205) = 13.14, p < 0.001, R2 = 0.39) in which anxiety, emotion- and avoidance-oriented coping and MS-related disability were positively related to work difficul[1]ties. The analysis of depression resulted in a significant model (F(10,205) = 14.98, p < 0.001, R2 = 0.42) in which depression, emotion- and avoidance-oriented coping and MS-related disability were positively related to work difficulties. None of the interaction effects were significant.
Conclusions: Work difficulties were positively related to anxiety, depression, emotion- and avoidance[1]oriented coping and MS related disability in workers with MS.
Self-reported work productivity in people with multiple sclerosis and its association with mental and physical health
Purpose: This study aimed to identify mental health, physical health, demographic and disease character[1]istics relating to work productivity in people with multiple sclerosis (MS).
Methods: In this cross-sectional study, 236 employed people with MS (median age ¼ 42 years, 78.8% female) underwent neurological and neuropsychological assessments. Additionally, they completed ques[1]tionnaires inquiring about work productivity (presenteeism: reduced productivity while working, and absenteeism: loss of productivity due to absence from work), mental and physical health, demographic and disease characteristics. Multiple linear and logistic regression analyses were performed with present[1]eeism and absenteeism as dependent variables, respectively.
Results: A model with mental and physical health factors significantly predicted presenteeism F(11,202) ¼ 11.33, p < 0.001, R2 ¼ 0.38; a higher cognitive (p < 0.001) and physical impact (p ¼ 0.042) of fatigue were associated with more presenteeism. A model with only mental health factors significantly predicted absenteeism; v2 (11)¼37.72, p < 0.001, with R2 ¼ 0.27 (Nagelkerke) and R2 ¼ 0.16 (Cox and Snell). Specifically, we observed that more symptoms of depression (p ¼ 0.041) and a higher cognitive impact of fatigue (p ¼ 0.011) were significantly associated with more absenteeism.
Conclusions: In people with MS, both cognitive and physical impact of fatigue are positively related to pres[1]enteeism, while symptoms of depression and cognitive impact of fatigue are positively related to absenteeism.
2020
Empathy in multiple sclerosis–Correlates with cognitive, psychological and occupational functioning
Background: Recent studies report deficits in social cognition in individuals with multiple sclerosis (MS). Social cognitive skills such as empathy are important for adequate social and occupational functioning. Our objectives are: (1) to examine whether empathy differs between individuals with MS and healthy controls, (2) to examine relations between empathy and cognitive, psychological and occupational functioning.
Methods: 278 individuals with MS (relapsing-remitting subtype) and 128 healthy controls from the MS@Work study participated in this investigation. The participants completed questionnaires about demographics, cognitive, psychological and occupational functioning, and underwent neurological and neuropsychological examinations. Mann-Whitney U-tests were used to examine group differences in empathy. Pearson and Spearman rank correlation analyses were used to examine relations between empathy and the other measures.
Results: Empathy did not differ between individuals with MS and healthy controls. In individuals with MS, higher empathy was correlated with a higher educational level (X2(df) = 13.2(2), p = 0.001), better verbal learning (r = 0.20, p = 0.001), less symptoms of depression (r=−0.21, p = 0.001), higher extraversion (r = 0.25, p ≤ 0.001), agreeableness (r = 0.55, p ≤ 0.001) and conscientiousness (r = 0.27, p ≤ 0.001) and better occupational functioning in terms of work scheduling and output demands (r = 0.23, p = 0.002) and less cognitive/psychological work barriers (r = −0.21, p = 0.001). In healthy controls, higher empathy was correlated with less symptoms of depression (r = −0.34, p ≤ 0.001), less fatigue (r = −0.37, p ≤ 0.001), higher agreeableness (r =0.59, p≤0.001) and better occupational functioning in terms of work ability as compared to lifetime best (r = 0.28, p = 0.001) and less cognitive/psychological work barriers (r = −0.34, p ≤ 0.001). Empathy did not differ between unemployed and employed individuals with MS or healthy controls.
Conclusion: Empathy did not differ between individuals with MS and healthy controls. Within both investigated groups, higher empathy was weakly to moderately correlated with less symptoms of depression, higher agreeableness and better occupational functioning. We also found unique correlations for empathy within the investigated groups. Longitudinal studies are needed to further examine social cognition in relation to cognitive, psychological and occupational functioning in both individuals with MS and healthy controls. It would be particularly interesting to concurrently examine changes in the brain network involved with social cognition.
2019
A Dutch validation study of the Multiple Sclerosis Work Difficulties Questionnaire in relapsing remitting multiple sclerosis
Purpose: The current study aimed to evaluate the psychometric properties of the Dutch version of the Multiple Sclerosis Work Difficulties Questionnaire-23 (MSWDQ-23).
Methods: Two hundred and thirty-nine employed persons with multiple sclerosis (MS) and 59 healthy controls completed the MSWDQ-23. To verify the factor structure, a confirmatory factor analysis was conducted. To assess construct validity, the MSWDQ-23 scores were correlated to measures of physical disability, fatigue, cognitive and neuropsychiatric problems, depression, health-related quality of life, and work-related variables. MSWDQ-23 scores were compared within different age groups, gender, education levels, and job types. Predictive validity was assessed using a logistic regression analysis to predict a deterioration in employment status after one year based on MSWDQ-23 scores.
Results: The internal consistency of the MSWDQ-23 was acceptable (a¼0.913, 95% CI¼0.897–0.928) and the results indicated a fair fit. The MSWDQ-23 showed acceptable construct validity, confirming 94% of the hypotheses. The total scale and the psychological/cognitive subscale were able to predict a deterioration in employment status after one year (v2(1)¼18.164, p<0.001).
Conclusions: The Dutch version of the MSWDQ-23 is a valid and internally consistent instrument to measure self-reported work difficulties in persons with MS.
Caregiver strain among life partners of persons with mild disability due to relapsing-remitting multiple sclerosis
Background: Multiple sclerosis (MS) is a chronic disorder of the central nervous system with an unpredictable disease course. Life partners often become caregivers, which can be both rewarding and challenging, as the caregiver’s physical and mental health is often negatively affected. Previous studies on caregiver strain focused on caregivers of persons with MS with relatively high disability levels, while caregiver strain may already be experienced by life partners living with mildly disabled persons with MS.
Objective: The current study examines factors associated with caregiver strain in life partners of persons with mild disability due to relapsing-remitting MS.
Methods: We included 173 persons with relapsing-remitting MS (79% female; mean age 42.8 years; 90% employed; median EDSS 2.0) and their life partners. The life partners completed questionnaires on caregiver strain and neuropsychiatric and cognitive functioning of the person with MS. The persons with MS completed questionnaires about demographics, fatigue, personality, physical, cognitive and neuropsychiatric functioning, and underwent neuropsychological and neurological examinations. A linear regression analysis was conducted to examine predictors of caregiver strain.
Results: 24% of the life partners experienced above average levels of caregiver strain. A multivariate linear regression analysis revealed that a higher age of the person with MS (β=0.16, p=0.04), more physical disability (β=0.17 p=0.04), more cognitive and neuropsychiatric problems of the person with MS as reported by the life partner (β=0.33, p=0.001) and higher severity of neuropsychiatric symptoms as reported by the life partner (β=0.32, p=0.001) were associated with higher caregiver strain (R2=0.49).
Conclusion: Higher caregiver strain in life partners of persons with mild disability due to relapsing-remitting MS was primarily associated with cognitive and neuropsychiatric problems of the person with MS.
The Relation between Cognitive Functioning and Work Outcomes in Patients with Multiple Sclerosis: A Systematic Literature Review
Background: Cognitive dysfunction is increasingly being recognized as an important limiting factor in work participation in patients with multiple sclerosis. This literature review provides a description, synthesis and interpretation of the existing literature and identifies gaps in current knowledge.
Methods: Papers published between 1970 and April 2017 were included. Clinical trials, randomized controlled trials or observational quantitative studies in which data on cognitive factors associated with employment, work functioning or work-related problems were reported. Papers were manually double checked by two blinded reviewers.
Results: A total of 41 papers were included of which 4 described prospective, longitudinal studies. The majority of studies reported positive associations between cognitive functioning and work outcomes (38/41 studies; 93%). Positive associations were found between work outcomes and global cognitive functioning (8/9 studies; 89%), language (8/17 studies; 47%), processing speed/ working memory (23/26 studies; 88%),new learning and memory (12/22 studies; 55%), executive functioning (10/17; 59%), intelligence (1/6; 17%) and self-reported cognitive functioning (14/15; 93%). None of the reviewed studies found a relation between visuospatial processing and work outcomes (0/8; 0%). Models including cognitive measures as well as demographic (age, education), neurological (disability, fine motor coordination, disease course), and psychological variables (depression, personality, fatigue) best predicted work outcomes.
Conclusion: By conducting this review we found ample evidence that objective cognitive functioning (specifically processing speed/ working memory and executive functioning) and self-reported cognitive functioning are important independent associates of work outcomes and these factors should be addressed by healthcare professionals. Future research could benefit from a focus on longitudinal changes in cognition and its relation to work outcomes.
Cognitive functioning as a predictor of employment status in relapsing-remitting multiple sclerosis: a 2-year longitudinal study
Background: Cognitive functioning has been linked to employment outcomes in multiple sclerosis (MS) in cross-sectional studies. Longitudinal studies are however lacking and previous studies did not extensively examine executive functioning.
Objectives: We examined whether baseline cognitive functioning predicts a change in employment status after 2 years, while taking into account mood, fatigue and disability level.
Methods: A total of 124 patients with relapsing-remitting MS (pwMS) and 60 healthy controls were included. They underwent neurological and neuropsychological examinations and completed online questionnaires. PwMS were divided into a stable and deteriorated employment status group (SES and DES), based on employment status 2 years after baseline. We first examined baseline differences between the SES and DES groups in cognitive functioning, mood, fatigue and disability level. A logistic regression analysis was performed, with change in employment status (SES/DES) as dependent variable.
Results: The DES group included 22% pwMS. Group differences were found in complex attention, executive functioning, self-reported cognitive functioning, fatigue and physical disability. More physical disability (OR = 1.90, p = 0.01) and lower executive functioning (OR = 0.30, p = 0.03) were retained as independent predictors of DES (R2 = 0.22, p ≤ 0.001).
Conclusions: Baseline physical disability and executive functioning, but none of the other variables, moderately predicted a deterioration in employment status 2 years later.
2018
The capability set for work – correlates of sustainable employability in workers with multiple sclerosis
Background: The aim of this study was to examine whether work capabilities differ between workers with Multiple Sclerosis (MS) and workers from the general population. The second aim was to investigate whether the capability set was related to work and health outcomes.
Methods: A total of 163 workers with MS from the MS@Work study and 163 workers from the general population were matched for gender, age, educational level and working hours. All participants completed online questionnaires on demographics, health and work functioning. The Capability Set for Work Questionnaire was used to explore whether a set of seven work values is considered valuable (A), is enabled in the work context (B), and can be achieved by the individual (C). When all three criteria are met a work value can be considered part of the individual’s ‘capability set’.
Results: Group differences and relationships with work and health outcomes were examined. Despite lower physical work functioning (U = 4250, p = 0.001), lower work ability (U = 10591, p = 0.006) and worse self-reported health (U = 9091, p ≤ 0.001) workers with MS had a larger capability set (U = 9649, p ≤ 0.001) than the general population. In workers with MS, a larger capability set was associated with better flexible work functioning (r = 0.30), work ability (r = 0.25), self-rated health (r = 0.25); and with less absenteeism (r = − 0.26), presenteeism (r = − 0.31), cognitive/neuropsychiatric impairment (r = − 0.35), depression (r = − 0.43), anxiety (r = − 0.31) and fatigue (r = − 0.34).
Conclusions: Workers with MS have a larger capability set than workers from the general population. In workers with MS a larger capability set was associated with better work and health outcomes.
2017
“Always looking for a new balance”: toward an understanding of what it takes to continue working while being diagnosed with relapsing-remitting multiple sclerosis
Background: The aim of this study was to gain insight into the meaning of work in the everyday lives of people with relapsing-remitting multiple sclerosis, and the barriers and facilitators to staying in work.
Methods: Nineteen employed adults diagnosed with relapsing-remitting multiple sclerosis participated in narrative interviews. All interviews were transcribed and coded for thematic analysis.
Results: For people with relapsing-remitting multiple sclerosis, continuing to work was a precarious balancing act. Five themes influenced this balance: becoming familiar with the disease, adjusting expectations, having an understanding and realistic line manager, seeing work as meaningful life activity and strategic considerations.
Conclusions: People receiving a diagnosis of relapsing-remitting multiple sclerosis have to refamiliarize themselves with their own body in a meaningful way to be able to continue their work. Rehabilitation professionals can support them herein by taking into account not merely functional capabilities but also identity aspects of the body. Medication that stabilizes symptoms supports making the necessary adjustments. A trusting relationship with the line manager is vital for this adaptation process. Additionally, a match between being adequately challenged by work, while still having the capacity to meet those work demands, is needed, as is long-term financial stability.
2016
Coping strategies in relation to negative work events and accommodations in employed multiple sclerosis patients
Background: Job loss is common in multiple sclerosis (MS) and is known to exert a negative effect on quality of life. The process leading up to job loss typically includes negative work events, productivity losses and a need for accommodations. By using active coping strategies job loss may be prevented or delayed.
Objective: Our goal was to examine negative work events and accommodations in relation to coping strategies in employed relapsing-remitting MS patients.
Methods: Ninety-seven MS patients (77% females; 21-59 years old) completed questionnaires concerning the patient’s work situation, coping strategies, demographics, physical, psychological and cognitive functioning. Forward binary logistic regression analyses were conducted to examine coping strategies and other (disease) characteristics predictive of reported negative work events and accommodations.
Results: Nineteen per cent of the employed MS patients reported one or more negative work events, associated with a higher use of emotion-oriented coping and more absenteeism. Seventy-three per cent reported using one or more work accommodations, associated with a higher educational level and more presenteeism. MS patients reporting physical changes to the workplace employed more emotion-oriented coping, while flexible scheduling was associated with task-oriented coping.
Conclusion: Emotion-oriented and task-oriented coping strategies are associated with negative work events and the use of accommodations.
Factors that influence work participation in patients with multiple sclerosis
Despite a recent work history 70 to 80% of people with multiple sclerosis (MS) are unable to retain employment. Leading up to unemployment, many may experience a reduction in hours or work responsibilities and increased time missed from work. Work participation is very important for one’s personal identity and quality of life. This article summarizes research on the many factors associated with decreased employment status and work absenteeism in MS. These include physical and cognitive functioning, immunomodulatory treatment, psychological factors and the work situation. The recently started MS@Workstudy is a multicenter study in which these factors will be examined during a three year period in a large group of MS patients.
2015
Work Participation and Executive Abilities in Patients with Relapsing-Remitting Multiple Sclerosis
The majority of patients with Multiple Sclerosis (MS) are unable to retain employment within 10 years from disease onset. Executive abilities, such as planning, working memory, attention, problem solving, inhibition and mental flexibility may have a direct impact on the ability to maintain a job. This study investigated differences in subjective and objective executive abilities between relapsing-remitting MS patients with and without a paid job. We included 55 relapsing-remitting MS patients from a community-based sample (47 females; mean age: 47 years; 36% employed). Patients underwent neurological, cognitive and psychological assessments at their homes, including an extensive executive test battery. We found that unemployed patients had a longer disease duration (t(53)=2.76, p=0.008) and reported more organising and planning problems (χ2(1)=6.3, p=0.012), higher distractibility (Kendall’s tau-b= -0.24, p=0.03) and more cognitive fatigue (U=205.0, p=0.028, r=-0.30) than employed patients. Unemployed patients completed slightly less categories on the Wisconsin Card Sorting Test (U=243.5, p=0.042, r=-0.28). Possible influential factors such as age, educational level, physical functioning, depression and anxiety did not differ between groups. In conclusion, while relapsing-remitting MS patients without a paid job reported more executive problems and cognitive fatigue than patients with a paid job, little differences were found in objective executive abilities. Further research is needed to examine possible causal relations.
The MS@Work study: a 3-year prospective observational study on factors involved with work participation in patients with relapsing-remitting Multiple Sclerosis
Background: Multiple Sclerosis (MS) is the most common cause of neurological disability in young and middle-aged adults. At this stage in life most people are in the midst of their working career. The majority of MS patients are unable to retain employment within 10 years from disease onset. Leading up to unemployment, many may experience a reduction in hours or work responsibilities and increased time missed from work. The MS@Work study examines various factors that may influence work participation in relapsing-remitting MS patients, including disease-related factors, the working environment and personal factors.
Methods/design: The MS@Work study is a multicenter, 3-year prospective observational study on work participation in patients with relapsing-remitting MS. We aim to include 350 patients through 15–18 MS outpatient clinics in the Netherlands. Eligible participants are 18 years and older, and either currently employed or within three years since their last employment. At baseline and after 1, 2 and 3 years, the participants are asked to complete online questionnaires (including questions on work participation, work problems and accommodations, cognitive and physical ability, anxiety, depression, psychosocial stress, quality of life, fatigue, empathy, personality traits and coping strategies) and undergo cognitive and neurological examinations. After six months, patients are requested to only complete online questionnaires. Patient perspectives on maintaining and improving work participation and reasons to stop working are gathered through semi-structured interviews in a sub-group of patients.
Discussion: Prospective studies with long-term follow-up on work participation in MS are rare, or take into account a limited number of factors. The MS@Work study provides a 3-year follow-up on various factors that may influence work participation in patients with relapsing-remitting MS. We aim to identify factors that relate to job loss and to provide information about preventative measures for physicians, psychologists and other professionals working in the field of occupational health.
2014
A Pilot Study on Factors Involved with Work Participation in the Early Stages of Multiple Sclerosis
Background: Up to 30% of recently diagnosed MS patients lose their jobs in the first four years after diagnosis. Taking into account the personal and socio-economic importance of sustaining employment, it is of the utmost importance to examine factors involved with work participation.
Objective: To investigate differences in self-reported functioning in recently diagnosed MS patients with and without a paid job.
Methods: Self-reports of physical and cognitive functioning, depression, anxiety and fatigue were gathered from 44 relapsing-remitting MS patients diagnosed within 3 years.
Results: Patients with a paid job (57%) reported better physical functioning (p,0.001), better memory functioning (p = 0.01) and a lower physical impact of fatigue (p = 0.018) than patients without a paid job. Physical functioning was the main predictor of employment status in a logistic regression model. In those with a paid job better memory functioning (r = 0.54, p = 0.005) and a lower social impact of fatigue (r =20.46, p = 0.029) correlated with an increased number of working hours.
Conclusion: Better physical functioning is the primary factor involved with increased work participation in early MS. Better self-reported memory functioning and less social fatigue were associated with increased working hours. These findings highlight the importance of battling these symptoms in the early stages of MS.
2021
A Dutch validation study of the Multiple Sclerosis Work difficulties questionnaire in relapsing remitting multiple sclerosis
Purpose: The current study aimed to evaluate the psychometric properties of the Dutch version of the Multiple Sclerosis Work Difficulties Questionnaire-23 (MSWDQ-23).
Methods: Two hundred and thirty-nine employed persons with multiple sclerosis (MS) and 59 healthy controls completed the MSWDQ-23. To verify the factor structure, a confirmatory factor analysis was con[1]ducted. To assess construct validity, the MSWDQ-23 scores were correlated to measures of physical dis[1]ability, fatigue, cognitive and neuropsychiatric problems, depression, health-related quality of life, and work-related variables. MSWDQ-23 scores were compared within different age groups, gender, education levels, and job types. Predictive validity was assessed using a logistic regression analysis to predict a deterioration in employment status after one year based on MSWDQ-23 scores.
Results: The internal consistency of the MSWDQ-23 was acceptable (a ¼ 0.913, 95% CI¼ 0.897–0.928) and the results indicated a fair fit. The MSWDQ-23 showed acceptable construct validity, confirming 94% of the hypotheses. The total scale and the psychological/cognitive subscale were able to predict a deterior[1]ation in employment status after one year (v2 (1)¼18.164, p < 0.001).
Conclusions: The Dutch version of the MSWDQ-23 is a valid and internally consistent instrument to measure self-reported work difficulties in persons with MS.
Self-reported occupational functioning in persons with relapsing-remitting multiple sclerosis: does personality matter?
Background: Multiple sclerosis (MS) poses a major threat to sustainable employability. Identifying conditions and factors that promote work participation is of great importance. Our objective was to explore the contribution of personality traits in explaining occupational functioning in MS.
Methods: 241 participants with relapsing-remitting MS (78% female, median age: 42.0 years, median EDSS: 2.0) and 60 healthy controls (70% female, median age: 45.0 years) underwent neuropsychological and neurological examinations and completed questionnaires. Multivariate logistic and linear regression analyses were conducted to examine relations between personality traits and self-reported occupational functioning, while accounting for known correlates.
Results: Personality traits were not associated with self-reported occupational functioning when correcting for known correlates. A higher impact of fatigue (B = -0.05, p = .005 and B = -0.04, p = .009) and depression (B = -0.22, p = .008 and B = -0.21, p = .01) were associated with no paid job (R2 = 0.13) and considering to reduce work hours (R2 = 0.12). A higher impact of fatigue (B = -0.05, p = .008, β = 0.46, p = .001 and β = − 0.36, p = .001) was associated with absenteeism from work (R2 = 0.15), more presenteeism (R2 = 0.35) and lower work ability (R2 = 0.25). A higher impact of fatigue (β = 0.46, p = .001) and anxiety (β = 0.25, p = .001) were associated with more work difficulties (R2 = 0.54).
Conclusion: Personality traits did not explain additional variance in self-reported occupational functioning in persons with relapsing-remitting MS with mild disability. The impact of fatigue was the main and most consistent correlate of occupational functioning, often combined with depression or anxiety. Total explained variance of the models was limited, emphasizing the need to additionally examine other (contextual) factors when considering occupational challenges in MS.
2022
2021
2020
2019
2018
Misverstanden over werken met MS. Persbericht Roche, februari 2018 (Interview with L.H. Visser)
2017
2016
Van der Hiele, K. (2016), Having a chronic disease and a job - is that even possible?, maart 2016.
Van der Meide, H. & Visser, L.H. Chronisch zieke krijgt van zijn baas weinig begrip, april 2016.
2015
2014
Welke factoren zorgen ervoor dat mensen met MS kunnen blijven werken? Care4Contact, januari 2014 (Interview with K. van der Hiele)
eCoaching@Work for MS
The eCoaching@Work for MS study aims to use the valuable knowledge gathered during MS@Work study to develop and evaluate the (cost)effectiveness of a novel eHealth vocational programme. This programme aims to enable workers with MS to overcome work difficulties and achieve important work values.