Disclosing or concealing multiple sclerosis in the workplace: two sides of the same coin-insights from a Swedish population-based survey.

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.

Work Adjustments by Types of Occupations Amongst People with Multiple Sclerosis: A Survey Study.

PURPOSE: To explore the occurrence of work adjustments for people with multiple sclerosis (MS) across types of occupations (managerial, office, and manual workers). METHODS: All working-aged (20-50 years) residents in Sweden diagnosed with MS were invited to participate in a web-based survey in 2021. Responses were linked to individual-level nationwide registers. Descriptive analyses were conducted to compare sociodemographic and clinical variables across occupations as well as other responses. The odds ratio of having any adjustment at work was determined using multinomial logistic regression. RESULTS: From all 4412 respondents (52% response rate), 3313 employees were included. The majority were women (72%) and had low (24.2%) or mild disease severity (44.7%). Nevertheless, different work adjustments across occupations were observed. Compared to the other occupations, office workers reported more invisible symptoms, more work adjustments and considered adapted schedules as the most important adjustment. On the contrary, more managers reported having no limiting symptoms and consequently, disclosed their diagnosis less often. They also reported having fewer work adjustments and more opportunities to modify their work than office and manual workers. Manual workers had a higher likelihood to report needing more support at work than office workers and managers. Further, a higher likelihood of having work adjustments was associated with progressive MS, higher MS severity, and invisible symptoms. CONCLUSION: A more severe clinical profile of MS was associated with having work adjustments. The physical demands and responsibilities of an occupation play an important role when requesting and getting work adjustments amongst employees with MS.

Unequal access? Use of sickness absence benefits by precariously employed workers with common mental disorders: a register-based cohort study in Sweden.

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. DESIGN: Register-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. CONCLUSIONS: The 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.

Disease-modifying therapies and cost-of-illness progression among people newly diagnosed with multiple sclerosis: a national register-based cohort study covering treatment initiation with interferons, glatiramer acetate or natalizumab.

OBJECTIVES: Disease-modifying therapies (DMTs) can slow disease progression in multiple sclerosis (MS). The objective of this study was to explore the cost-of-illness (COI) progression among newly diagnosed people with MS in relation to the first DMT received. DESIGN AND SETTING: A cohort study using data from nationwide registers in Sweden. PARTICIPANTS: People with MS (PwMS) in Sweden first diagnosed in 2006-2015, when aged 20-55, receiving first-line therapy with interferons (IFN), glatiramer acetate (GA) or natalizumab (NAT). They were followed up through 2016. OUTCOME MEASURES: Outcomes (in Euros, €) were: (1) secondary healthcare costs: specialised outpatient and inpatient care including out-of-pocket expenditure, DMTs including hospital-administered MS therapies, and prescribed drugs, and (2) productivity losses: sickness absence and disability pension. Descriptive statistics and Poisson regression were computed, adjusting for disability progression using the Expanded Disability Status Scale. RESULTS: 3673 newly diagnosed PwMS who were treated with IFN (N=2696), GA (N=441) or NAT (N=536) were identified. Healthcare costs were similar for the INF and GA groups, while the NAT group had higher costs (p value<0.05), owing to DMT and outpatient costs. IFN had lower productivity losses than NAT and GA (p value>0.05), driven by fewer sickness absence days. NAT had a trend towards lower disability pension costs compared with GA (p value>0.05). CONCLUSIONS: Similar trends over time for healthcare costs and productivity losses were identified across the DMT subgroups. PwMS on NAT maintained their work capacity for a longer time compared with those on GA, potentially leading to lower disability pension costs over time. COI serves as an objective measure to explore the importance of DMTs in maintaining low levels of progression of MS over time.

Self-reported restrictions in different life domains and associated factors among people with multiple sclerosis in Sweden.

BACKGROUND AND PURPOSE: The heterogeneous symptoms of multiple sclerosis (MS) can considerably impact the lives of people with MS (PwMS). The aim of this study was to describe the extent of restrictions in different life domains that PwMS experience in relation to their symptoms and level of disability. METHODS: A cross-sectional survey was conducted among working-age PwMS in Sweden. The 4052 participants who answered the questions on restrictions in work and private life domains (family, leisure activities, and contact with friends/acquaintances) were included. Predictors of restrictions in the four domains were determined through multinomial logistic regression. RESULTS: Approximately one-third of the PwMS reported no restrictions in the domains of work (35.7%), family (38.7%), leisure activities (31.1%) or contact with friends/acquaintances (40.3%), the remaining participants reported moderate to severe restrictions. Tiredness/fatigue was the most commonly reported most-limiting symptom (49.5%). PwMS with Expanded Disability Status Scale (EDSS) scores of zero reported restrictions in life domains ranging from 39.6% (friends/acquaintances) to 45.7% (leisure activities). Age, sex, education, type of living area, MS type, type of most-limiting symptom, and EDSS score predicted restrictions in work and private life domains. CONCLUSIONS: Most PwMS reported similar levels of restrictions in both their work and private lives. Restrictions in these life domains were also reported by PwMS with low disability levels (EDSS = 0) and were often associated with invisible symptoms such as fatigue. Even in a contemporary MS cohort, close to 90% of PwMS report limitations due to MS.

Trajectories of disease-modifying therapies and associated sickness absence and disability pension among 1923 people with multiple sclerosis in Sweden.

BACKGROUND: There is limited information on the trajectories of disease-modifying therapy (DMT) use and their association with sickness absence and/or disability pension (SADP) among people with multiple sclerosis (PwMS). The objective of the study was to identify trajectories of DMT use over 10 years among PwMS, identify sociodemographic and clinical factors associated with the trajectories, and to assess the association between identified trajectories and SADP days. METHODS: A longitudinal register-based study was conducted, on a prospective data set linked across six nationwide registers, assessing treatment courses of PwMS with DMTs for the 10 years following multiple sclerosis (MS) onset. The study included 1923 PwMS with MS onset in 2007-2010, when aged 19-56 years. In each 6-month-period, their treatment was categorized as before treatment, high-efficacy, non-high-efficacy, or no DMT. Sequence analysis was performed to identify sequences of the treatment categories and cluster them into different DMT trajectories. Cluster belonging, in relation to demographic and clinical characteristics, was assessed through log-multinomial regression analysis. The association of trajectories/cluster-belonging with SADP net days was assessed using generalized estimating equation (GEE) models. RESULTS: Cluster analyses identified 4 trajectories of DMT use: long-term non-high-efficacy DMTs (38.6%), escalation to high-efficacy DMTs (31.2%), delayed start and escalation to high-efficacy DMTs (15.4%), and discontinued/ no DMT (14.2%). Age, MS type, expanded disability status scale (EDSS) score and the number of DMT switches were associated with cluster belonging. The youngest age group (18-25) were more likely to be in the escalation to high-efficacy cluster. People with primary progressive MS were more likely to be in the delayed start or discontinued/ no DMT cluster. Higher EDSS scores were associated to being in the other three clusters than in the long-term non-high-efficacy DMTs cluster. Higher number of DMT switches were associated with being in the escalation to high-efficacy DMTs cluster but less likely to be in the delayed start or discontinued/ no DMT clusters. Descriptive analyses showed a trend of fewer mean SADP days among PwMS using non-high-efficacy DMT than the other clusters about 9 years after onset. PwMS in the escalation to high-efficacy and discontinued/no DMT clusters had more SADP days. PwMS in the delayed start and escalation to high-efficacy DMTs cluster, started with fewer SADP days which increased over time. SADP days adjusted through GEE models showed trends comparable with the descriptive analysis. CONCLUSION: This study described the long-term real-world trajectories of DMT use among PwMS in Sweden using sequence analysis and showed the association of the trajectories with SADP days as well as sociodemographic and clinical characteristics.

Excess costs of multiple sclerosis: a register-based study in Sweden.

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.

Self-employment, sickness absence, and disability pension in multiple sclerosis.

OBJECTIVES: Early withdrawal from work is common among people with multiple sclerosis (PwMS). However, little is known about how this is influenced by the type of employment. The aims were to explore the distributions of self-employed and other types of employment (employed or no earnings from work) before and after MS diagnosis and its associations with sickness absence (SA) and disability pension (DP) among PwMS and matched references without MS. MATERIALS & METHOD: A 6-year longitudinal cohort study of 2779 individuals diagnosed with MS in 2008-2012 when aged 20-59 and of 13,863 matched individuals without MS from Sweden's population was conducted. Hazard ratios (HR) of >180 SA and/or DP days/year were compared by employment status among PwMS and references using Cox proportional hazard models with 95% confidence intervals (CI). RESULTS: Most had no SA or DP. Nevertheless, PwMS had higher SA and DP levels compared with references. PwMS had a higher likelihood to reach >180 days of SA (HR = 4.89, 95% CI = 4.43-5.40) or days of DP (HR = 6.31, 95% CI = 5.46-7.30), irrespective of the employment status. Self-employed references had less likelihood for >180 SA days than employed references. However, self-employed and employed PwMS had a similar likelihood for >180 SA days. Transitions of employees to self-employment were infrequent among PwMS (1.7%) and references (2.6%). CONCLUSIONS: PwMS transit to SA and DP to a higher extent than references. In contrast to individuals without MS, self-employed PwMS had similar SA levels to employed PwMS. Switching to self-employment was not a predominant choice for people recently diagnosed with MS.

Early vs. late treatment initiation in multiple sclerosis and its impact on cost of illness: A register-based prospective cohort study in Sweden.

Background: Early treatment with disease modifying therapies (DMTs) for multiple sclerosis (MS) has been associated with lower disability progression; the aim was to explore its association with cost of illness (COI) in MS. Methods: All people with relapsing-remitting MS in the Swedish MS register, aged 20-57 years and receiving their first MS DMT in 2006-2009, were followed in nationwide registers for 8 years. Healthcare costs (in- and outpatient healthcare, DMTs and other prescribed drugs), and productivity losses (sickness absence and disability pension) of individuals receiving therapy in ≤6 months after diagnosis (early treatment group) were compared to those receiving therapy >6 months (late treatment group). Using Poisson regressions, the mean COI per patient per year, and per group, was estimated, adjusted for disability progression. Results: The early treatment group comprised 74% of the 1562 individuals included in the study. The early treatment group had lower productivity losses over time. Both groups had similar healthcare costs, which first increased and then decreased over time. Conclusions: Early DMT in MS could result in lower productivity losses possibly through maintained work capacity. COI serves as an objective measure showing the advantage of early vs. late treatment initiation in MS.

Standardized mortality ratios in multiple sclerosis: Systematic review with meta-analysis.

OBJECTIVE: To perform a meta-analysis of all-cause, cause-specific and gender-specific standardized mortality ratio and crude mortality rate for people with multiple sclerosis. We also examined the temporal trends in this data. METHODS: Medline, Cochrane Library and Scopus were searched. Keywords were "multiple sclerosis" and "standardized mortality ratio" or "Standardized Mortality Ratio". We included longitudinal studies with available data on the number of deaths, follow-up period, person years and reports of standardized mortality ratio (SMR). Crude mortality ratio (CMR) was calculated and SMR was extracted. CMRs and log-SMR were pooled by the method of inverse variance. Meta-regression models were used to investigate temporal trends. RESULTS: Fifty-seven articles were screened. Fifteen studies were included covering a period 1949-2013 (160,000 patients; 21,225 deaths). The all-cause SMR for people with MS was 2.61 (95% CI 2.58 to 2.65). For men this was 2.47 (95% CI 2.42 to 2.52) and for women 2.57 (95% CI 2.53 to 2.61). The CMR was 13.45/1000 person years. Cause-specific SMR was 1.74 (1.67 to 1.81) for CVD, 4.70 (4.45 to 4.87) for respiratory disease and infection, 1.81 (1.64 to 2.0) for accident and suicide and 0.99 (0.93 to 1.06) for cancer. Meta-regression analysis of the SMR compared to midpoint follow-up year revealed no relationship (co-efficient 0.001, p = .98). CONCLUSIONS: People with multiple sclerosis (MS) have reduced overall survival and increased risk of death from cardiovascular, respiratory and infectious disease as well as accidents and suicide. This does not appear to have changed over the last 65 years.

Trajectories of sickness absence and disability pension days among people with multiple sclerosis by type of occupation.

BACKGROUND: Multiple sclerosis (MS) can impact working life, sickness absence (SA) and disability pension (DP). Different types of occupations involve different demands, which may be associated with trajectories of SA/DP among people with MS (PwMS). OBJECTIVES: To explore, among PwMS and references, if SA/DP differ according to type of occupation. Furthermore, to examine how trajectories of SA/DP days are associated with type of occupation among PwMS. METHODS: A longitudinal nationwide Swedish register-based cohort study was conducted, including 6100 individuals with prevalent MS and 38,641 matched references from the population. Trajectories of SA/DP were identified with group-based trajectory modelling. Multinomial logistic regressions were estimated for associations between identified trajectories and occupations. RESULTS: Increase of SA/DP over time was observed in all occupational groups, in both PwMS and references, with higher levels of SA/DP among PwMS. The lowest levels of SA/DP were observed among managers. Three trajectory groups of SA/DP were identified: Persistently Low (55.2%), Moderate Increasing (31.9%) and High Increasing (12.8%). Managers and those working in Science & Technology, and Economics, Social & Cultural were more likely to belong to the Persistently Low group. CONCLUSION: Results suggest that type of occupation plays a role in the level and course of SA/DP.

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.

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.

Multiple sclerosis (MS) is a neurological disease that can affect many parts of everyday life, including work. We studied the extra costs related to MS. Extra costs were defined as the difference in costs between people with MS and the general population in Sweden. To do this, we compared the costs of working-aged individuals with MS from 4 years before to 4 years after the year of MS diagnosis with those of individuals without MS. For each year, we measured the healthcare consumption and days absent owing to sickness absence or a disability pension. We found that people with MS had larger costs already before the diagnosis of MS. For all types of costs we studied, there were extra costs. The extra costs became larger with time and had a steep increase around the year of MS diagnosis. When we summarised the costs from all 9 years, people with MS had five times higher annual costs related to healthcare consumption than those without MS. There were also twice as high costs for lost production from days absent with sickness absence or a disability pension. While our data from national registers had objective measurements of the included costs, it did not include information on the costs for drugs administered in healthcare, rehabilitation or informal care from family members. We studied the costs of all people diagnosed with MS in 2010­12 in Sweden, related their disease trajectory with their costs, as well as compared their costs with the costs of a group from the general population. Our results of the extra costs of MS prior to diagnosis could suggest an unmet need. Earlier diagnosis and quickly starting treatment may lead to lower extra costs of MS over time.

Types of working-life sequences among people recently diagnosed with multiple sclerosis in Sweden: a nationwide register-based cohort study.

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.

Cost-of-illness trajectories among people with multiple sclerosis by comorbidity: A register-based prospective study in Sweden.

BACKGROUND: Comorbidities are common among people with multiple sclerosis (PwMS); yet, their impact on the cost-of-illness (COI) in MS is unknown. OBJECTIVE: Explore the heterogeneity in COI trajectories among newly diagnosed PwMS in relation to type of comorbidity. METHODS: A nationwide longitudinal cohort study, using prospectively collected Swedish register data for seven years. The COI/year of 639 PwMS diagnosed in 2006, when aged 25-60, was estimated until 2013. Using healthcare data, PwMS were categorised into six comorbidity groups: ocular; cardiovascular, genitourinary or cancer disease; musculoskeletal; mental; neurological other than MS; and injuries. One group of PwMS without comorbidity was also created. Group-based trajectory modelling was applied, examining different COI trajectories within each comorbidity group. RESULTS: Across the seven follow-up years, PwMS with mental comorbidities had the highest COI overall (€36,482). Four COI trajectories were identified within each comorbidity group; the largest trajectory had high healthcare costs and productivity losses (36.3%-59.6% of PwMS, across all comorbidity groups). 59.6% of PwMS with mental comorbidity had high healthcare costs and productivity losses. CONCLUSION: High COI and heterogeneity in COI trajectories could be partly explained by the presence of chronic comorbidities in the year around MS diagnosis, including the presence of mental comorbidity.

Diagnosis-specific sickness absence and disability pension before and after multiple sclerosis diagnosis: An 8-year nationwide longitudinal cohort study with matched references.

BACKGROUND: Multiple sclerosis (MS) typically onsets when of working age and may reduce work capacity. Previous studies have examined the risk of sickness absence (SA) and disability pension (DP) among MS patients, however, limited knowledge is available on whether MS patients have an excess risk for SA/DP when compared with the general population in Sweden. Moreover, no information exists on the actual diagnoses for SA and DP among MS patients and whether the patterns of SA/DP diagnoses differs to those without MS. We aimed to explore diagnosis-specific SA and DP among working-aged MS patients both before and after MS diagnosis, in comparison to the levels and distributions of SA and DP diagnoses of a matched reference group and analyze the risk of diagnosis-specific DP. MATERIALS AND METHODS: Longitudinal Swedish register data of the 2567 MS patients diagnosed with MS in 2009-2012 when aged 25-59 and 10,268 population-based matched references (matched on sex, age, educational level, type of living area, and country of birth) were analysed regarding annual diagnosis-specific SA and DP in the four years before and four years after MS diagnosis. Annual differences in the mean numbers of SA and/or DP net days were calculated with 95% confidence intervals (CI). Hazard ratios (HR) with 95% CI from Cox proportional hazard models were used to compare risks for new all-cause and diagnosis-specific DP after MS diagnosis among the MS patients and references. RESULTS: The mean SA/DP net days/year increased among MS patients over follow-up, due to both MS and other diagnoses. During follow-up, around 50% of MS patients had some SA/DP compared to 20% of references. The mean days of SA/DP among the MS patients compared to references increased from 10.3 more days (95% CI: 6.6-14.2) four years prior to MS diagnosis to 68.9 days (62.8-75.1) 4 years after MS diagnosis. Although most new DP among MS patients were due to MS, 15% were not. The adjusted HR for all-cause DP was 23.1 (18.1-29.5). MS patients also had higher risks of new DP due to all diagnoses except MS (HR 3.4; 2.4-4.8), musculoskeletal (HR 2.6; 1.1-6.0) and mental (HR 2.0; 1.1-3.6) diagnoses compared with references. CONCLUSION: MS patients had higher levels of SA/DP days/year than the references, already 4 years before the MS diagnosis, and increasingly so thereafter. The excess of SA/DP prior to MS diagnosis could be related to MS onset. However, the excess of SA/DP days were not all due to MS diagnoses, even after being diagnosed with MS. MS patients had a higher risk of having a new DP after being diagnosed with MS in total, but also for diagnoses other than MS.

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.

OBJECTIVES: 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. METHODS: People with MS in Sweden, aged 25-60 years 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 5 years, 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. RESULTS: 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, 5 years after diagnosis, for the 2006 cohort). SA costs continuously decreased over 5 years, 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. CONCLUSIONS: 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.

Validation of multiple sclerosis diagnoses in the Swedish National Patient Register.

Population-based registers are widely used in epidemiological studies. We aimed to estimate the validity of multiple sclerosis (MS) diagnoses registered in the Swedish National Patient Register (NPR) by two sequential register-based case-definition algorithms. Prevalent MS patients aged 16-64 years were identified from the in- and specialised out-patient NPR in 2001-2013, using International Classification of Diseases code G35. These identified MS diagnoses were validated through two sequential register-based case-definition algorithms, as the 'gold-standard' reference, by linking individual-level data longitudinally to other nationwide registers. The primary algorithm first sought to corroborate the MS diagnoses with MS-specific information in other nationwide registers. The exploratory secondary algorithm identified individuals with MS-related information in other registers and those who were unable to be followed sufficiently. Through multi-register linkage, we estimated the number of confirmed and uncertain individuals with an MS diagnosis recorded in the NPR. A total of 19,781 individuals (mean age at first visit 45.2 years; 69.5% women) had at least one MS diagnosis recorded in the NPR during 2001-2013. Using the two case-definition algorithms, 92.5% (n = 18,291) of the MS diagnoses recorded in the NPR were confirmed, while 7.5% (n = 1490) remained uncertain. Our findings indicate that a very high percentage of patients coded with an MS diagnosis in the Swedish NPR actually have MS, and supports the use of the NPR as a viable source to identify individuals with an MS diagnosis for population-based research. This exploratory methods paper suggests an alternative novel method to verify individuals' diagnoses in register-based settings.

Costs of illness progression for different multiple sclerosis phenotypes: a population-based study in Sweden.

BACKGROUND: Little is known of how the cost of illness and health-related quality of life changes over time after a diagnosis of multiple sclerosis. OBJECTIVES: The aim was thus to explore the progression of annual direct and indirect costs and health-related quality of life among people with multiple sclerosis of working ages, following diagnosis with relapsing-remitting multiple sclerosis (RRMS), primary progressive multiple sclerosis (PPMS) or conversion to secondary progressive multiple sclerosis (SPMS) after RRMS. METHODS: Swedish nationwide registers were linked to estimate the annual cost of illness in 2006-2013 among people with a registered new multiple sclerosis phenotype, including: direct costs, indirect costs, and health-related quality of life. RESULTS: Drugs and indirect costs for sick leave were the main cost drivers after diagnosis with RRMS. After conversion to SPMS, the RRMS cost drivers were replaced by indirect costs for disability pension. The main cost driver in newly diagnosed PPMS was indirect costs for sick leave, later replaced by disability pension. Health-related quality of life scores were similar after RRMS and SPMS. CONCLUSIONS: After initial high indirect costs for sick leave, people with RRMS had higher drug costs compared to people with PPMS. Cost drivers during SPMS initially followed the pattern in the RRMS population, but were replaced by indirect costs for disability pension.

Earnings among people with multiple sclerosis compared to references, in total and by educational level and type of occupation: a population-based cohort study at different points in time.

OBJECTIVES: To investigate earnings among people with multiple sclerosis (PwMS) before and after MS diagnosis compared with people without MS, and if identified differences were associated with educational levels and types of occupations. Furthermore, to assess the proportions on sickness absence (SA) and disability pension (DP) in both groups. DESIGN: Population-based longitudinal cohort study, 10 years before until 5 years after MS diagnosis. SETTING: Working-age population using microdata linked from nationwide Swedish registers. PARTICIPANTS: Residents in Sweden in 2004 aged 30-54 years with MS diagnosed in 2003-2006 (n=2553), and references without MS (n=7584) randomly selected by stratified matching. OUTCOME MEASURES: Quartiles of earnings were calculated for each study year prior to and following the MS diagnosis. Mean earnings, by educational level and type of occupation, before and after diagnosis were compared using t-tests. Tobit regressions investigated the associations of earnings with individual characteristics. The proportions on SA and/or DP, by educational level and type of occupation, for the diagnosis year and 5 years later were compared. RESULTS: Differences in earnings between PwMS and references were observed beginning 1 year before diagnosis, and increased thereafter. PwMS had lower mean earnings for the diagnosis year (difference=SEK 28 000, p<0.05), and 5 years after diagnosis, this difference had more than doubled (p<0.05). These differences remained after including educational level and type of occupation. Overall, the earnings of PwMS with university education and/or more qualified occupations were most like their reference peers. The proportions on SA and DP were higher among PwMS than the references. CONCLUSIONS: The results suggest that the PwMS' earnings are lower than the references' beginning shortly before MS diagnosis, with this gap increasing thereafter. Besides SA and DP, the results indicate that educational level and type of occupation are influential determinants of the large heterogeneity of PwMS' earnings.

Disposable income trajectories of working-aged individuals with diagnosed multiple sclerosis.

OBJECTIVES: The economic situation of individuals diagnosed with multiple sclerosis (MS) is under studied, with the levels and sources of incomes suggested to vary with socio-demographics. We aimed to describe the diversity of disposable income (DI) trajectories among working-aged individuals with incident MS, and investigate the associations of socio-demographic characteristics with identified trajectories. MATERIALS & METHODS: A population-based cohort study of all 1528 individuals first diagnosed with MS in 2008-2009 when aged 25-59, with data linked from three nationwide Swedish registers. DI was defined as net earnings plus net income from benefits. Trajectories of mean annual DI from 7 years prior to 4 years after diagnosis were identified by group-based trajectory modelling. An individual's group membership was determined by individual model-fit estimates from a multinomial logit function. Chi-squared tests and multinomial logistic regressions estimated the associations between trajectory membership and socio-demographic (sex, age, education, birth country, type of living area and family situation) and work disability (sickness absence and disability pension) characteristics. RESULTS: Seven distinct DI trajectories were identified: two consistently low (50.7% of individuals); four increasing (39.0%); and one decreasing (10.3%). Socio-demographic and work disability characteristics were associated with trajectories; the increasing trajectories had older age-profiles and higher proportions of men, while university education was less common in the consistently low trajectories. CONCLUSIONS: We identified high diversity in DI development within the cohort around MS diagnosis. Socio-demographic and work disability characteristics differed between the trajectories. This broader information of the economic situation is important to convey to patients.