| 1. |
- Dervish, Jessica, et al.
(författare)
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Disclosing or concealing multiple sclerosis in the workplace : two sides of the same coin-insights from a Swedish population-based survey
- 2024
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Ingår i: Frontiers In Public Health. - : Frontiers Media S.A.. - 2296-2565. ; 12
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Tidskriftsartikel (refereegranskat)abstract
- Background: People with multiple sclerosis (PwMS) face health and social challenges of living with a chronic and potentially disabling condition. To disclose or conceal MS at work may critically affect individuals' work situation, career opportunities, and health. PwMS may experience a dilemma when assessing if the possible benefits of disclosing the diagnosis outweigh the possible risks. However, concealing in the long-term may have health implications and prevent opportunities for support and work adjustments. Few studies have examined what drives PwMS to disclose or conceal MS at work and the consequences of these ways of managing MS.Objectives: To explore the reasons PwMS report for disclosing and/or concealing their MS diagnosis in the workplace, as well as the consequences they have experienced.Methods: A web-based survey of PwMS was conducted in 2021. All individuals aged 20-50 listed in the Swedish MS registry were invited to participate. The response rate was 52% and among these participants, 3,810 (86%) completed questions regarding workplace disclosure and/or concealment of MS. Free-text responses on these topics were analyzed using inductive content analysis.Results: It was common to disclose MS in the workplace (85%). Identified drivers for disclosure and concealment related to four categories: Work-related, Social, Personal and Circumstantial. Work-related drivers focused on employment or protecting one's career, and changing one's work situation versus maintaining it. Social drivers included the need for support, addressing or preventing stigma, and being considerate of others. Personal drivers were linked to moral values/personal beliefs and processing of the diagnosis. Circumstantial drivers related to involuntary or unforeseen events, timing factors, one's medical condition and external opinion/advice. Identified consequences for disclosure and concealment related to three categories: Work-life, Social, and Personal. Work-life consequences included work arrangements, and career opportunities. Social consequences were linked to MS awareness, stigma, interactions and social support, as well as dynamics of work relationships. Personal consequences involved levels of disease acceptance, and attitudes toward managing MS.Conclusion: PwMS often described the question of disclosure as challenging and navigated it with caution, as both disclosure and concealment can yield favorable and unfavorable outcomes.
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| 2. |
- Gyllensten, Hanna, et al.
(författare)
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Costs of illness progression for different multiple sclerosis phenotypes : a population-based study in Sweden
- 2019
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Ingår i: Multiple Sclerosis Journal, Experimental, Translational and Clinical. - : Sage Publications. - 2055-2173. ; 5:2
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundPopulation-based estimates of costs of illness and health-related quality of life, by disability levels among people with multiple sclerosis, are lacking.ObjectivesTo estimate the annual costs of illness and health-related quality of life, by disability levels, among multiple sclerosis patients, 21–64 years of age.MethodsMicrodata from Swedish nationwide registers were linked to estimate the prevalence-based costs of illness in 2013, including direct costs (prescription drug use and specialised healthcare) and indirect costs (calculated using sick leave and disability pension), and health-related quality of life (estimated from the EQ-5D). Disability level was measured by the Expanded Disability Status Scale (EDSS).ResultsAmong 8906 multiple sclerosis patients, EDSS 0.0–3.5 and 7.0–9.5 were associated with mean indirect costs of SEK 117,609 and 461,357, respectively, whereas direct costs were similar between the categories (SEK 117,423 and 102,714, respectively). Prescription drug costs represented 40% of the costs of illness among multiple sclerosis patients with low EDSS, while among patients with high EDSS more than 80% were indirect costs. Among the 1684 individuals who had reported both EQ-5D and EDSS, the lowest health-related quality of life scores were found among those with a high EDSS.ConclusionAmong people with multiple sclerosis, we confirmed higher costs and lower health-related quality of life in higher disability levels, in particular high indirect costs.
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| 3. |
- Hernando-Rodriguez, Julio C., et al.
(författare)
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Unequal access? Use of sickness absence benefits by precariously employed workers with common mental disorders : a register-based cohort study in Sweden
- 2023
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Ingår i: BMJ Open. - 2044-6055. ; 13:7
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Tidskriftsartikel (refereegranskat)abstract
- Objective This study compares the use of sickness absence benefits (SABs) due to a common mental disorder (CMD) between precariously employed and non-precariously employed workers with CMDs. DesignRegister-based cohort study. Participants The study included 78 215 Swedish workers aged 27-61 who experienced CMDs in 2017, indicated by a new treatment with selective serotonin reuptake inhibitors (SSRIs). Excluded were those who emigrated or immigrated, were self-employed, had an annual employment-based income <100 Swedish Krona, had >90 days of unemployment per year, had student status, had SABs due to CMDs during the exposure measurement (2016) and the two previous years, had an SSRI prescription 1 year or less before the start of the SSRI prescription in 2017, had packs of >100 pills of SSRI medication, had a disability pension before 2017, were not entitled to SABs due to CMDs in 2016, and had no information about the exposure. Outcome The first incidence of SABs due to CMDs in 2017. Results The use of SABs due to a CMD was slightly lower among precariously employed workers compared with those in standard employment (adjusted OR [aOR] 0.92, 95% CI 0.81 to 1.05). Particularly, women with three consecutive years in precarious employment had reduced SABs use (aOR 0.48, 95% CI 0.26 to 0.89), while men in precarious employment showed weaker evidence of association. Those in standard employment with high income also showed a lower use of SABs (aOR 0.74, 95% CI 0.67 to 0.81). Low unionisation and both low and high-income levels were associated with lower use of SABs, particularly among women. ConclusionsThe study indicates that workers with CMDs in precarious employment may use SABs to a lower extent. Accordingly, there is a need for (1) guaranteeing access to SABs for people in precarious employment and/or (2) reducing involuntary forms of presenteeism.
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| 4. |
- Karampampa, Korinna, et al.
(författare)
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Healthcare, Sickness Absence, and Disability Pension Cost Trajectories in the First 5 Years After Diagnosis with Multiple Sclerosis: A Prospective Register-Based Cohort Study in Sweden.
- 2020
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Ingår i: PharmacoEconomics - open. - : Springer Science and Business Media LLC. - 2509-4254 .- 2509-4262. ; 4, s. 91-103
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Tidskriftsartikel (refereegranskat)abstract
- The aim was to longitudinally explore the healthcare, sickness absence (SA), and disability pension (DP) cost trajectories among newly diagnosed people with multiple sclerosis (MS), and investigate whether trajectories differ by year of MS diagnosis, sociodemographics, and multi-morbidity.People with MS in Sweden, aged 25-60years and with a new MS diagnosis in the years 2006, 2007, 2008, or 2009 (four different cohorts) were identified in nationwide registers and followed prospectively for 5years, determining the annual, per patient, direct (inpatient and specialised outpatient healthcare, co-payments, and dispensed drugs) and indirect (SA and DP) costs. Descriptive statistics and group-based trajectories were computed.In total, 3272 people with new MS were identified. In all cohorts, direct costs increased the year after diagnosis and thereafter declined (e.g. from €8261 to €9128, and to €7953, 5years after diagnosis, for the 2006 cohort). SA costs continuously decreased over 5years, while DP costs increased (e.g. from €9795 to €2778 vs. from €7277 to €15,989, respectively, for the 2006 cohort). When pooling all cohorts, four trajectories of direct and indirect costs were identified. A total of 32.1% of people with MS had high direct and indirect costs, which first increased and then decreased; the contrary was seen for trajectories with low direct and indirect costs.There is heterogeneity in the development of MS costs over time after diagnosis; decreasing cost trajectories could be associated with the use of innovative MS therapies, slowing disease progression over time.
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| 5. |
- Murley, Chantelle, et al.
(författare)
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Cost-of-Illness Progression Before and After Diagnosis of Multiple Sclerosis : A Nationwide Register-Based Cohort Study in Sweden of People Newly Diagnosed with Multiple Sclerosis and a Population-Based Matched Reference Group
- 2021
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Ingår i: PharmacoEconomics (Auckland). - : Springer. - 1170-7690 .- 1179-2027. ; 39, s. 835-851
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Multiple sclerosis (MS) is a chronic disease associated with increased healthcare utilisation and productivity losses.OBJECTIVE: The objective of this study was to explore the progression of healthcare costs and productivity losses before and after diagnosis of MS in comparison to that of a population-based matched reference group.METHODS: We conducted a nationwide, Swedish register-based cohort study of working-aged people with MS diagnosed in 2010-12 (n = 1988) and population-based matched references without MS (n = 7981). Nine years of observation spanned from 4 years prior (Y-4) to 4 years (Y+4) after the year of diagnosis (Y0). Differences in annual all-cause healthcare costs (inpatient and specialised outpatient healthcare as well as pharmacy-dispensed prescribed drugs) and costs of productivity loss (days with sickness absence and disability pension) were estimated between the people with MS and references using t tests with 95% confidence intervals. The average excess costs of MS were estimated using generalised estimating equation models.RESULTS: People with multiple sclerosis had higher costs before the diagnosis of MS and also thereafter. The mean differences in healthcare costs and productivity losses between the people with MS and matched references in Y-4 were 216 EUR (95% confidence interval 58-374) and 1540 EUR (95% confidence interval 848-2233), with larger cost excesses observed in later study years. Summarising the 9 study years, people with MS had fivefold higher excess healthcare costs than references, and more than twice as high productivity losses.CONCLUSIONS: Excess healthcare costs and productivity losses occur already before the diagnosis of MS and increase with time. The excess costs findings before diagnosis could suggest that an earlier diagnosis might lead to reduced excess costs of MS over time.
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| 6. |
- Murley, Chantelle Ellen
(författare)
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Work disability, economic situation, and societal costs of multiple sclerosis in Sweden
- 2022
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Multiple sclerosis (MS) affects many aspects of life and often leads to a reduction in an individual’s work capacity. This reduction, referred to as work disability, may lead to the use of social protections to replace lost earnings upon being absent and societal costs from the lost production. This thesis aimed to investigate the working life and economic situation of individuals in the early stages of their MS as well as the societal costs of MS. Methods: Four cohort studies using Swedish register data of working-aged individuals were conducted. Work disability was operationalised as net days with sickness absence (SA) and/or disability pension (DP). In Study I, the heterogeneity of disposable income (DI) trajectories from 7 years before to 4 years after the diagnosis year (2008-9) of 1528 people with MS (PwMS) was explored with group-based trajectory modelling. The trajectory members were characterised through use of chi2-tests and multinomial logistic regressions. In Study II, common patterns of working life among 2652 PwMS diagnosed in 2008-11 were identified with sequence analysis. Sequences from 1 year before and 5 years after the diagnosis year were constructed and the members of the sequence types were characterised with multinomial logistic regressions and dependent t-tests. In Study III and IV, productivity losses were calculated with the human capital approach from the days with work disability. Healthcare costs included the costs of specialised out- and inpatient healthcare as well as dispensed drugs. Excess costs of MS were estimated by comparing the all-cause costs of PwMS with the costs of matched references with independent t-tests. Study III quantified the annual excess costs of 1988 PwMS and 7981 matched references without MS from 4 years before to 4 years after the diagnosis year (2010-12). Generalised estimation equation (GEE) models tested the interaction of MS and time. In Study IV, the excess costs from resource use in 2018 with bootstrapped 95% CIs were estimated for 2806 PwMS in Stockholm and 28,060 matched references without MS. Primary healthcare and disease modifying therapies were also costed, with analyses stratified by time since diagnosis. Results: Seven DI trajectories were identified in Study I: Four increasing with different gradients (39.0% of individuals), two constantly low (50.7%), and one decreasing (10.3%). Older age profiles and higher proportions of men were observed in the increasing trajectories and higher proportions with work disability and without university education in the decreasing and constantly low trajectories. In Study II, six types of working life sequences were identified: Stable High Activity (48.4% of the sequences), three types with mixed activity and varying SA/DP regarding the number of days per year and timing (32.6%), Stable High SA/DP (14.5%), and Other (4.5%). Stable High Activity had the highest odds for university education. All sequence types, except Stable High SA/DP, had higher DI in the final study year than the first. In Study III, excess costs of MS were observed already before MS diagnosis. Mean annual excess costs of MS of 2285 SEK (95% CI: 613-3956) per person for healthcare costs and 16,310 SEK (95% CI: 8980-23,640) for productivity losses were observed four years before diagnosis. The excess costs of MS increased thereafter and were reflected in the MS and time interaction estimates. In Study IV, the mean annual excess healthcare costs of MS were 77,383 SEK (95% CI: 73,299-81,950) per person with MS. Primary healthcare accounted for 9% and disease modifying therapies for 48% of the excess healthcare costs. The mean annual excess productivity losses of MS were 138,121 SEK (95% CI: 149,224-146,985) per person with MS, mostly due to DP (79%). The resource use behind the excess costs of MS differed by time since diagnosis. Conclusions: The findings describe the economic situation of PwMS and quantify the excess societal costs of early MS. Most PwMS were in work and had increasing or stable DI in the study periods close to MS diagnosis. However, work disability was often and increasingly a part of PwMS’ working life and was associated with decreasing DI trajectories or relatively low levels of DI as well as unstable working life sequences. Excess costs of MS for lost production and healthcare use were incurred already before MS diagnosis and increased thereafter. The progression of the excess costs of MS reflected different patterns of resource use with time from MS diagnosis. The increasing excess costs of MS from productivity losses began in the early stages of MS and may reflect unmet needs of PwMS regarding morbidity and work capacity which early intervention may ameliorate.
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| 7. |
- Murley, Chantelle, et al.
(författare)
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Excess costs of multiple sclerosis : a register-based study in Sweden
- 2023
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Ingår i: European Journal of Health Economics. - : Springer. - 1618-7598 .- 1618-7601. ; 24, s. 1357-1371
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Tidskriftsartikel (refereegranskat)abstract
- Background and objective: Population-based estimates of the socioeconomic burden of multiple sclerosis (MS) are limited, especially regarding primary healthcare. This study aimed to estimate the excess costs of people with MS that could be attributed to their MS, including primary healthcare.Methods: An observational study was conducted of the 2806 working-aged people with MS in Stockholm, Sweden and 28,060 propensity score matched references without MS. Register-based resource use was quantified for 2018. Annual healthcare costs (primary, specialised outpatient, and inpatient healthcare visits along with prescribed drugs) and productivity losses (operationalised by sickness absence and disability pension days) were quantified using bottom-up costing. The costs of people with MS were compared with those of the references using independent t-tests with bootstrapped 95% confidence intervals (CIs) to isolate the excess costs of MS from the mean difference.Results: The mean annual excess costs of MS for healthcare were €7381 (95% CI 6991–7816) per person with MS with disease-modifying therapies as the largest component (€4262, 95% CI 4026–4497). There was a mean annual excess cost for primary healthcare of €695 (95% CI 585–832) per person with MS, comprising 9.4% of the excess healthcare costs of MS. The mean annual excess costs of MS for productivity losses were €13,173 (95% CI 12,325–14,019) per person with MS, predominately from disability pension (79.3%).Conclusions: The socioeconomic burden of MS in Sweden from healthcare consumption and productivity losses was quantified, updating knowledge on the cost structure of the substantial excess costs of MS.
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| 8. |
- Murley, Chantelle, et al.
(författare)
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Exploring the working life of people with multiple sclerosis during the COVID-19 pandemic in Sweden
- 2024
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Ingår i: BMC Public Health. - : Springer Nature. - 1471-2458. ; 24
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Tidskriftsartikel (refereegranskat)abstract
- Background The COVID-19 pandemic led to vast changes in working life and conditions in which we work. Thesechanges may affect people with multiple sclerosis (PwMS) differently. We aimed to describe the working situation ofPwMS 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 inan 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 chisquare tests by sex, MS severity, education, and profession. The open-ended answers were analysed through contentanalysis.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 impactof the ongoing pandemic to one’s daily occupation was reported by 26.2%, with different characteristics observedacross the impacts. Four categories of type of answers were identified from the open-ended answers: Direct impacton one’s occupation, Disclosing or concealing MS in the workplace, Worry and uncertainty, and Broader impact to lifesituation.Conclusions PwMS navigated the pandemic by interrupting as well as continuing their working lives. Many PwMSreported that the pandemic did not affect their work situation. However, the reported impacts differed among theparticipants and a sense of uncertainty and worry was often underlying their statements. Lessons from the pandemicmay support future work participation.Keywords SARS-CoV-2, Containment measures, W
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| 9. |
- Murley, Chantelle, et al.
(författare)
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Trajectories of disposable income among people of working ages diagnosed with multiple sclerosis : a nationwide register-based cohort study in Sweden 7 years before to 4 years after diagnosis with a population-based reference group
- 2018
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Ingår i: BMJ Open. - : BMJ Publishing Group Ltd. - 2044-6055. ; 8:5
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVES: To describe how disposable income (DI) and three main components changed, and analyse whether DI development differed from working-aged people with multiple sclerosis (MS) to a reference group from 7 years before to 4 years after diagnosis in Sweden.DESIGN: Population-based cohort study, 12-year follow-up (7 years before to 4 years after diagnosis).SETTING: Swedish working-age population with microdata linked from two nationwide registers.PARTICIPANTS: Residents diagnosed with MS in 2009 aged 25-59 years (n=785), and references without MS (n=7847) randomly selected with stratified matching (sex, age, education and country of birth).PRIMARY AND SECONDARY OUTCOME MEASURES: DI was defined as the annual after tax sum of incomes (earnings and benefits) to measure individual economic welfare. Three main components of DI were analysed as annual sums: earnings, sickness absence benefits and disability pension benefits.RESULTS: We found no differences in mean annual DI between people with and without MS by independent t-tests (p values between 0.15 and 0.96). Differences were found for all studied components of DI from diagnosis year by independent t-tests, for example, in the final study year (2013): earnings (-64 867 Swedish Krona (SEK); 95% CI-79 203 to -50 528); sickness absence benefits (13 330 SEK; 95% CI 10 042 to 16 500); and disability pension benefits (21 360 SEK; 95% CI 17 380 to 25 350). A generalised estimating equation evaluated DI trajectory development between people with and without MS to find both trajectories developed in parallel, both before (-4039 SEK; 95% CI -10 536 to 2458) and after (-781 SEK; 95% CI -6988 to 5360) diagnosis.CONCLUSIONS: The key finding of parallel DI trajectory development between working-aged MS and references suggests minimal economic impact within the first 4 years of diagnosis. The Swedish welfare system was responsive to the observed reductions in earnings around MS diagnosis through balancing DI with morbidity-related benefits. Future decreases in economic welfare may be experienced as the disease progresses, although thorough investigation with future studies of modern cohorts are required.
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| 10. |
- Murley, Chantelle, et al.
(författare)
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Types of working-life sequences among people recently diagnosed with multiple sclerosis in Sweden : a nationwide register-based cohort study
- 2020
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Ingår i: BMJ Open. - : BMJ Publishing Group Ltd. - 2044-6055. ; 10:12
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVES: To explore sequences of annual states of activity and sickness absence (SA) or disability pension (DP) (SA/DP) among working-aged people with multiple sclerosis (PwMS) as well as characteristics associated with the identified types of working-life sequences.DESIGN: Nationwide Swedish register-based cohort study from 1 year prior to 5 years after the year of multiple sclerosis (MS) diagnosis.SETTING: Sweden.PARTICIPANTS: PwMS diagnosed in 2008-2011 when aged 20-55 (n=2652, 69.9% women).PRIMARY AND SECONDARY OUTCOME MEASURES: Individual-level sequences spanning 7 years were constructed with annual states regarding activity (income from paid work, student allowances, parental leave or unemployment compensation) and/or SA/DP. Types of working-life sequences were identified among the individuals' sequences using hierarchical cluster analysis with optimal matching dissimilarity measures.RESULTS: Six types of working-life sequences were identified. The largest cluster, Stable High Activity, represented 48.4% of the cohort. Other types were: Stable High SA/DP (14.5%); Other (4.5%); and three types with mixed activity and varying SA/DP regarding the number of days/year and timing (32.6%). Characteristics of the different identified types of sequences were subsequently investigated. All types of sequences had lower odds for university education (OR range: 0.18-0.72) compared with Stable High Activity. Increasingly higher odds of having anxiety/depression compared with Stable High Activity were observed across the types of sequences, by increasing proportions of SA/DP. Stable High SA/DP sequences were less likely than Stable High Activity to be prescribed MS drugs in the MS diagnosis year (OR 0.61; 95% CI 0.47 to 0.78). All types of sequences had higher disposable income in the final study year than the first, except for Stable High SA/DP sequences (Swedish Krona 4669, 95% CI -1892 to 11 230).CONCLUSIONS: Diversity in working life was influenced by sociodemographic and clinical characteristics resulting in different activity and SA/DP patterns across the six identified types of working-life sequences.
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