Fitsum Sebsibe Teni

Background and objectives: Managing family planning and treatment in women with multiple sclerosis (MS) requires balancing disease control with medication safety. Despite guidelines, practice often adapts to individual needs, with clinicians adjusting disease-modifying therapies (DMTs) to protect maternal and fetal health. This study examines pregnancy-related MS treatment in Sweden. Methods: We identified 130 women (153 pregnancies) from a 2021 online MS questionnaire and linked responses to the Swedish MS register to capture DMT use during three periods: 25 weeks before conception, pregnancy (≈40 weeks), and 25 weeks postpartum. DMTs were classified as “accepted,” “discontinuation recommended”—requiring monitoring, or “not recommended” in planned pregnancy. Results: Before conception, among 153 pregnancies, 26% involved DMTs considered acceptable before and during pregnancy, while 55% involved DMTs for which discontinuation before conception is recommended—of which rituximab accounted for nearly half of all pregnancies (47%, n = 72). Three percent were exposed to ´not recommended´ DMTs, and 16% had no prior treatment. Overall, 29% discontinued DMTs before or shortly after conception, while 58% (n = 88) had ongoing or recent treatment exposure, defined as treatment administered within 6 months before conception or, in a minority of cases, after conception. Among these, 50% (n = 77) involved rituximab—and 13% remained untreated. Postpartum, 58% resumed treatment, 3% remained under long-lasting DMT effects, and 39% did not initiate DMT, likely due to breastfeeding. Discussion: Overall, real-world practice in Sweden broadly aligns with national recommendations, with widespread use of rituximab before pregnancy reflecting its perceived safety and durable effect, alongside some individualized deviations from discontinuation guidance.

Background and Objectives: Family planning and treatment management in women with multiple sclerosis (MS) require complex decision-making. In most cases, patients express their intention to start a family, giving physicians time to monitor their MS and align treatment plans accordingly. However, not all pregnancies are planned, which can make timely communication with healthcare providers challenging. This study explores the dynamics between patients and healthcare professionals in MS care, focusing on family planning and treatment decisions before, during, and after pregnancy. Methods: People with MS aged 20–50 in the Swedish MS register (SMSreg) were invited to participate in an online survey in 2021. Responses of 3078 women were linked to SMSreg and other national register datasets. Descriptive statistics and multinomial logistic regression explored information sources, care, family planning discussion, treatment satisfaction, and its impact on their disease and breastfeeding decisions. Results: Women with MS reported receiving annual care from a neurologist (88%), nurse (68%) or general practitioner (46%), with satisfaction ranging from 40–77%. Most were treated with high efficacy (HE) disease-modifying treatments (DMTs) (66%), of whom 49% used rituximab. Treatment satisfaction was higher among younger women, milder EDSS, and those on HE DMTs. Women who became pregnant after their MS diagnosis (41%) were more likely to have discussed family planning with a physician (78%) compared to those who had not been pregnant post-diagnosis (59%). Discussion: In Sweden, women with MS generally have regular contact with healthcare professionals, though satisfaction varies. Family planning discussions were more frequent among women who became pregnant after diagnosis, highlighting the importance of proactive communication. Treatment choices influence both satisfaction and reproductive decisions, underscoring the need for clear guidance and shared decision-making. Real-world data also indicate that rituximab is commonly used during peripregnancy, likely due to its favourable safety profile and long-lasting effect.

Background: Work ability index (WAI) is an instrument that measures work ability in workplace surveys and health examinations in occupational health and research. It has been used in different population groups. But research is limited among people with multiple sclerosis (PwMS). Objective: To determine the factors associated with work ability among PwMS in Sweden. Methods: A total of 4103 PwMS who answered a web-based survey were included in the analysis. Work ability was assessed using the work ability score (WAS) component of WAI. Univariable and multivariable linear regression analyses were performed to assess the association of sociodemographic, clinical, and self-reported health variables with WAS. Results: Just over half of the PwMS reported good (37.0%) or excellent (16.3%) WAS. The overall mean WAS was 6.9 (standard deviation = 2.8). Health-related quality of life (R-squared = 31.6%), fatigue (28.3%), occupation (22.6%), and expanded disability status scale (EDSS) score (18.1%), explained the highest proportions of variation in WAS, individually. In the adjusted model, occupation, EDSS score, and fatigue had the strongest associations with WAS with significantly lower scores in those with no occupation, higher EDSS score, and severe fatigue levels. Conclusion: Work ability among PwMS was lower than in the general population in Sweden. Occupation, EDSS score and fatigue were among the most important factors associated with work ability.

Background: Disease-modifying therapies (DMTs) have led to improved health and work productivity among people with multiple sclerosis (PwMS). Objectives: To describe trajectories of recent DMT use and their association with sickness absence and/or disability pension (SADP) among PwMS in Sweden. Methods: A longitudinal register–based study was conducted among 1395 PwMS with treatment start in 2014/2015. While DMT use over 5 years was assessed using sequence analysis resulting in four clusters, a 7-year (Y₋₂ toY₄) trend of SADP was analyzed using zero-inflated negative binomial regression. Results: Four clusters of DMT use trajectories were identified: long-term non-high-efficacy (483, 34.6%), long-term high-efficacy (572, 41%), escalation (221, 15.8%), and discontinuation (119, 8.5%). Progressive MS and higher expanded disability status scale scores were associated with the escalation, long-term high-efficacy, or discontinuation clusters. PwMS in the long-term high-efficacy and escalation clusters had higher likelihood of being on SADP. However, PwMS initiating high-efficacy DMTs demonstrated steeper decline in SADP than others. Conclusion: Using sequence analysis, this study showed recent DMT use trajectories among PwMS where initiation of high-efficacy DMTs has become more common. The trend of SADP was stable and lower in those using non-high-efficacy DMTs and larger improvements were shown in those initiating high-efficacy DMTs.

Background: The EQ VAS component of the EQ-5D questionnaire has been used to assess patients’ valuation of their own health besides its use for self-reporting of overall health status. The objective of the present study was to identify patients’ valuation of EQ-5D-3L health states using the EQ VAS in different patient groups over time and in comparison to the general population.Methods: Data were obtained from patients from nine National Quality Registers (n = 172,070 patients) at baseline and at 1-year follow-up and compared with data from the general population (n = 41,761 participants). The correlation between EQ VAS scores and EQ-5D-3L index based on the Swedish experience-based VAS value set was assessed. Ordinary least squares (OLS) regression models were used to determine the association between EQ-5D-3L dimensions and EQ VAS valuation.Results: EQ VAS scores showed consistency with severity of health states both at baseline and at 1-year follow-up in the nine selected EQ-5D-3L health states. The regression models showed mostly consistent decrements by severity levels in each dimension at both time points and similar to the general population. The dimension mainly associated with inconsistency was the self-care severity level three. Problems in the anxiety/depression dimension had the largest impact on overall health status in most of the patient groups and the general population.Conclusion: The study has demonstrated the important role EQ VAS can play in revealing patients’ valuation of their health and showed the variation in valuation of EQ-5D-3L dimensions and levels of severity across different patient groups.

Objectives: The visual analogue scale (VAS) has been used in the context of health and healthcare for various purposes, for example, to measure pain and to provide a single-index measure of health-related quality of life (HRQoL). This scoping review aims to describe how the VAS has been used for health state valuation in the published literature. Methods: The search was carried out in Medline, Web of Science and PsycInfo. The findings of the included articles were tabulated and presented descriptively using frequencies and proportions. Results: The database search yielded 4856 unique articles, out of these, 308 were included. In 83% of the articles, the main purpose for using a VAS was to value health states. The two most common perspectives when valuing health states with a VAS were hypothetical (44%) and own health (34%). Some (n = 14) articles used the VAS in the context of economic evaluations, including calculating quality-adjusted life years (QALYs). A large variation in the design of the VAS was found, including the description of the lower and upper anchors. Advantages and disadvantages with using a VAS were mentioned in 14% of the included articles. Conclusion: The VAS has been a common method for valuing health states, both as a stand-alone method and in combination with other valuation methods. Despite its widespread use, the design of the VAS has been inconsistent which makes comparison of results across studies challenging. Further research on the role of using the VAS in economic evaluations is warranted.

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.

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 independentt-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.