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Insurers often commission psychiatric experts to evaluate the eligibility of workers with mental disorders for disability benefits, by estimating their residual work capacity (RWC). We investigated the validity of a standardized, computer-based battery of established diagnostic instruments, for evaluating the personality, cognition, performance, symptom burden, and symptom validity of claimants. One hundred and fifty-three claimants for benefits were assessed by the assembled test battery, which was applied in addition to a conventional clinical work disability evaluation. A principal component analysis of the test and questionnaire battery data revealed six factors (Negative Affectivity, Self-Perceived Work Ability, Behavioral Dysfunction, Working Memory, Cognitive Processing Speed, and Excessive Work Commitment). Claimants with low, medium, and high RWC exclusively varied in the factor Negative Affectivity. Importantly, this factor also showed a strong association to psychiatric ratings of capacity limitations in psychosocial functioning. The findings demonstrate that the used test battery allows a substantiation of RWC estimates and of psychiatric ratings by objective and standardized data. If routinely incorporated in work disability evaluations, the test battery could increase their transparency for all stakeholders (insurers, claimants, medical experts, expert case-coordinators, and legal practitioners) and would open new avenues for research in the field of insurance medicine. The residual work capacity (RWC) estimation by medical experts is internationally good practice, but plagued by a relatively low interrater agreement. The current study shows that psychiatric RWC estimates and capacity limitation ratings can be substantiated by data from objective, standardized psychometric instruments. Systematically using such instruments might help to improve the poor interrater agreement for RWC estimates in work disability evaluations. Such data could also be used for adopting vocational trainings and return-to-work programs to the individual needs of workers with mental health problems. [ABSTRACT FROM AUTHOR]

Background: Multiple sclerosis (MS) notably affects adults of working age. For persons with MS (PwMS), being employed enhances their quality of life and it may be regarded as an indicator of overall functioning. Thus, ensuring work participation in PwMS is of general public health interest. Objective: To examine relevant socio-demographic, MS-, health- and work-related factors, including psychosocial working conditions, associated with currently working PwMS in Switzerland and their expected work retention. Methods: Using cross-sectional data of PwMS in the Swiss MS Registry (n = 541, median age = 48 [IQR 40;55]), multivariable logistic regression models were computed. First, currently working PwMS were characterised in comparison with those not currently working. Second, expected work retention, operationalized as subjective judgement "likely to work in the same job in 2 years", was examined within the group of currently working PwMS. Results: The factors age (OR 0.96, 95% CI 0.92–0.99), sex (OR 0.28, 95% CI 0.13–0.60), highest achieved job position (OR 1.21, 95% CI 1.01–1.46), health-related quality of life (HRQoL) (OR 1.02, 95% CI 1.01–1.04) and the number of MS symptoms (OR 0.90, 95% CI 0.82–0.98) were associated with currently working PwMS. Moreover, HRQoL (OR 1.07, 95% CI 1.04–1.10) and psychosocial working conditions, such as job resources (e.g. autonomy, control or social support) (OR 2.83, 95% CI 1.50–5.33) and job demands (e.g. workload, time pressure) (OR 0.41, 95% CI 0.18–0.90) were important factors for expected work retention among this group. Conclusions: Resourceful psychosocial working conditions are crucial for PwMS to maintain employment. Employers could contribute to work retention among PwMS by creating a work environment with resourceful psychosocial working conditions and providing, for instance, social support. [ABSTRACT FROM AUTHOR]

Background: Multiple sclerosis (MS) is the most common chronic, non-traumatic, neurologic disease in young adults. While approximate values of the disease burden of MS are known, individual drivers are unknown. Objective: To estimate the age-, sex-, and disease severity-specific contributions to the disease burden of MS. Methods: We estimated the disease burden of MS using disability-adjusted life years (DALYs) following the Global Burden of Disease study (GBD) methodology. The data sources consisted of the Swiss MS Registry, a recent prevalence estimation, and the Swiss mortality registry. Results: The disease burden of MS in Switzerland in 2016 was 6,938 DALYs (95%-interval: 6,018-7,955), which corresponds to 97 DALYs per 100,000 adult inhabitants. Morbidity contributed 59% of the disease burden. While persons in an asymptomatic (EDSS-proxy 0) and mild (EDSS-proxy >0–3.5) disease stage represent 68.4% of the population, they make up 39.8% of the MS-specific morbidity. The remaining 60.2% of the MS-specific morbidity stems from the 31.6% of persons in a moderate (EDSS-proxy 4–6.5) or severe (EDSS-proxy ≥7) disease stage. Conclusions: Morbidity has a larger influence on the disease burden of MS than mortality and is shared in a ratio of 2:3 between persons in an asymptomatic/mild and moderate/severe disease stage in Switzerland. Interventions to reduce severity worsening in combination with tailored, symptomatic treatments are important future paths to lower the disease burden of MS. [ABSTRACT FROM AUTHOR]

Background: When population-based databases are unavailable, nationwide assessments of the disease burden of multiple sclerosis (MS) resort to clinical, administrative or convenience-sampled data sources, which may produce results of limited external validity. Our aim was to develop a framework for estimating measures of occurrence of chronic diseases, and more broadly disease burden, that mitigate these limitations and to apply this framework to estimate the prevalence of multiple sclerosis (MS) in Switzerland. Methods: We developed a 7-step framework which implements the combination of several data sources together with a resampling and critical appraisal approach. The framework was applied to estimate the MS prevalence for 2016 in Switzerland, for which four distinct data sources (Swiss MS registry, Swiss national MS treatment registry, MediService database, and Swiss MS cohort study) were combined. Results were reviewed by disease experts and compared to earlier Swiss estimates and current prevalence estimates from other countries. Results: We estimate that in the year 2016 between 14,650 and 15,700 persons with MS have been living in Switzerland, yielding a period prevalence of 174–187/100,000 inhabitants. Compared to the last estimate in 1986, we detected a substantial increase of MS diagnoses which coincides with a higher number of diagnoses in women below the age of 65. Conclusions: Internationally, Switzerland is a high-prevalence country for MS, although estimates were somewhat lower than recent evaluations of Northern European countries. In addition, we corroborate previous reports that the prevalence increase coincides with a higher number of MS diagnoses among women. The proposed framework has wide applicability and the potential to place estimates of disease occurrence and burden with imperfect data availability on more solid grounds. [ABSTRACT FROM AUTHOR]

Background: Recent studies emphasise the importance of timely diagnosis and early initiation of disease-modifying treatment in the long-term prognosis of multiple sclerosis. Objectives: The objective of this study was to investigate factors associated with extended time to diagnosis and time to disease-modifying treatment initiation in the Swiss Multiple Sclerosis Registry. Methods: We used retrospective data (diagnoses 1996-2017) of the survey-based Swiss Multiple Sclerosis Registry and fitted logistic regression models (extended time to diagnosis ≥2 years from first symptoms, extended time to disease-modifying treatment initiation ≥1 year from diagnosis) with demographic and a priori defined variables. Results: Our study, based on 996 persons with multiple sclerosis, suggests that 40% had an extended time to diagnosis, and extended time to disease-modifying treatment initiation was seen in 23%. Factors associated with extended time to diagnosis were primary progressive multiple sclerosis (odds ratio (OR) 5.09 (3.12-8.49)), diagnosis setting outside of hospital (neurologist (private practice) OR 1.54 (1.16-2.05)) and more uncommon first symptoms (per additional symptom OR 1.17 (1.06-1.30)). Older age at onset (per additional 5 years OR 0.84 (0.78-0.90)) and gait problems (OR 0.65 (0.47-0.89)) or paresthesia (OR 0.72 (0.54-0.95)) as first symptoms were associated with shorter time to diagnosis. Extended time to disease-modifying treatment initiation was associated with older age at diagnosis (per additional 5 years OR 1.18 (1.09-1.29)). In more recent years, time to diagnosis and time to disease-modifying treatment initiation tended to be shorter. Conclusions: Even in recent periods, substantial and partially systematic variation regarding time to diagnosis and time to disease-modifying treatment initiation remains. With the emerging paradigm of early treatment, the residual variation should be monitored carefully. [ABSTRACT FROM AUTHOR]

Introduction: To estimate the value of interventions in multiple sclerosis (MS) – where lifetime costs and outcomes cannot be observed – outcome data have to be combined with costs. This requires that cost data be regularly updated. Objectives and methods: This study is part of a cross-sectional retrospective study in 16 countries collecting data on resource consumption and work capacity, health-related quality of life (HRQoL) and prevalent symptoms for patients with MS. Descriptive analyses are presented by level of severity, from the societal perspective, in CHF 2015. Results: A total of 721 patients (mean age 48 years) participated in Switzerland; 90% were below retirement age, and of these, 65% were employed. Employment was related to disease severity, and MS affected productivity at work for 69% of patients. Overall, 93% and 64% of patients experienced fatigue and cognition as a problem, respectively. The mean utility and annual costs were 0.799 and 29,600CHF at Expanded Disability Status Scale (EDSS) 0–3, 0.614 and 66,800CHF at EDSS 4–6.5 and 0.348 and 110,800CHF at EDSS 7–9, respectively. The mean cost of a relapse was estimated at 7600CHF. Conclusion: This study provides current data on MS in Switzerland that are important for development of health policies and to estimate the value of current and future treatments. [ABSTRACT FROM AUTHOR]

Background: Multiple sclerosis (MS) is one of the most frequently observed neurological conditions in Switzerland, but data sources for country-wide epidemiological trend monitoring are lacking. Moreover, while clinical and laboratory MS research are generally well established, there is a gap in patient-centered MS research to inform care management, or treatment decisions and policy making not only in Switzerland but worldwide.Methods: In light of these research gaps, the Swiss Multiple Sclerosis Society initiated and funded the Swiss Multiple Sclerosis Registry (SMSR) an open-ended, longitudinal and prospective, nationwide, patient-centered study. The SMSR recruits adult persons with a suspected or confirmed MS diagnosis who reside or receive care in Switzerland. The SMSR has established a governance structure with clear rules and guidelines. It follows a citizen-science approach with direct involvement of persons with MS (PwMS), who contribute actively to registry development, operations, and research. Main scientific goals entail the study of MS epidemiology in Switzerland, health care access and provision, as well as life circumstances and wellbeing of persons with MS. The innovative study design ("layer model") offers several participation options with different time commitments. Data collection is by means of regular surveys and medical record abstraction. Survey participation is offered in different modes (web, paper & pencil) and in the three main national languages (German, French, Italian). Participants also receive regular data feedbacks for personal use and self-monitoring, contextualized in the whole population of study participants. Data feedbacks are also used to solicit data corrections of key variables from participants.Discussion: The SMSR combines the advantages of traditional and novel research methods in medical research and has recruited over 1600 PwMS in its first year. The future-oriented design and technology will enable a response not only to future technological innovations and research trends, but also to challenges in health care provision for MS.Trial Registration: ClinicalTrials.gov   NCT02980640 ; December 6, 2016; retrospectively registered. [ABSTRACT FROM AUTHOR]

Background: Informal and formal volunteering engagement is a proxy for social integration and may have beneficial effects for physical and mental well-being in persons with multiple sclerosis (pwMS). As literature on the topic among the pwMS is lacking, this study aimed to determine frequency and type of volunteering performed by pwMS and to identify factors associated with volunteering., Methods: Cross-sectional, self-reported data of 615 pwMS participating in the Swiss Multiple Sclerosis Registry were analyzed using descriptive statistics to determine frequency and type of volunteering engagement. Univariable and multivariable generalized linear models with binomial distribution and log link function were used to identify factors associated with volunteering. Age, sex, employment status and gait disability were added to the multivariable model as fixed confounders. Sociodemographic, health-, work- and daily activity-related factors were included in the analysis., Results: About one third (29.4%) of participants reported engagement in volunteering activities, most often through charities (16.02%) and cultural organizations (14.36%). In the multivariable model, participants who had a university degree were more likely to volunteer than those with lower level of education (RR = 1.48 95% CI [1.14; 1.91]). The ability to pursue daily activities (as measured by the EQ-5D subscale) was strongly associated with participation in volunteering among pwMS. Compared with pwMS who had no or only slight limitations in daily activities, those with severe problems were markedly less likely to engage in volunteering (RR = 0.41, 95% CI [0.21; 0.80]) . Finally, pwMS who reported caring for and supporting their family (i.e., being a homemaker) were more likely to engage in volunteering activities than those who did not (RR = 1.52, 95% CI [1.15; 2.01])., Conclusion: Nearly one in three pwMS engaged in diverse volunteering activities. Having a university degree, being less limited in daily activities and being a homemaker increased the probability of pursuing volunteering activities. Contingent on individual-level motivations, resources or physical abilities, pwMS who experience challenges in performing daily activities or social barriers should be made aware of barrier-free offers of socially inclusive and volunteering activities, often provided by the national MS societies and health leagues., Competing Interests: Declaration of Competing Interest Mina Stanikić reports employment by Roche branch in Serbia, Roche d.o.o., from February 2019 to February 2020. The employer of Chiara Zecca receives support for advisor activities, speaking or grants from Celgene, Genzyme, Lilly, Merck, Novartis, Roche, and grants from Abbvie, Almirall, Biogen Idec, Celgene, Genzyme, Lilly, Merck, Novartis, Roche, Teva Pharma. Pasquale Calabrese has received honoraria for speaking at scientific meetings, serving at scientific advisory boards and consulting activities from Abbvie, Actelion, Almirall, Bayer-Schering, Biogen, EISAI, Lundbeck, Merck Serono, Novartis, Sanofi-Aventis and Teva. He also receives research grants from the Swiss Multiple Sclerosis Society (SMSG), and the Swiss National Research Foundation. Mathias Mettler, Urban Schwegler, Chloé Sieber, Vladeta Ajdacic-Gross, Stephanie Rodgers, Christina Haag, Susanne Kägi, Irene Rapold and Viktor von Wyl declare no competing interests., (Copyright © 2022 The Author(s). Published by Elsevier B.V. All rights reserved.)

Background: Multiple sclerosis (MS) impacts education, future career pathways and working capability and therefore may negatively impact the financial situation of persons with MS (pwMS) in Switzerland. We therefore investigated the financial situation and its influencing sociodemographic and disease-specific factors of pwMS compared to the general Swiss population with focus on material deprivation (MD)., Methods: Data on the financial situation of pwMS were collected via a specific questionnaire added to the regular, semi-annual follow-up assessments of the Swiss Multiple Sclerosis Registry. Questions were taken in an unmodified format from the standardized "Statistics on Income and Living Conditions" (SILC) questionnaire 2019 of the Federal Statistical Office of Switzerland which evaluates the financial situation of the general Swiss population, enabling a direct comparison of pwMS with the general Swiss population., Results: PwMS were 1.5 times more frequently affected by MD than the general Swiss population (6.3% of pwMS versus 4.2% of the general Swiss population) which was confirmed in a multivariable logistic regression analysis of pooled SILC and Swiss Multiple Sclerosis Registry (SMSR) data. High symptom burden, having only mandatory schooling, well as having a pending disability insurance application (as opposed to no application or receiving benefits) were associated with a higher odds of MD whereas higher education, older age, having a Swiss citizenship, living with a spouse or a partner or being currently employed were independently associated with a lower odds of MD., Conclusion: MS has a negative impact on the financial situation and is associated with MD. PwMS with a high symptom burden at the transition from work force to receiving disability benefits appeared to be vulnerable for MD. Higher education, older age, having a Swiss citizenship, living with a spouse or a partner or being currently employed were independently associated with a lower odds of MD., Competing Interests: Declaration of Competing Interest Kamm CP has received honoraria for lectures as well as research support from Biogen, Novartis, Almirall, Teva, Merck, Sanofi Genzyme, Roche, Janssen, Eli Lilly, Celgene and the Swiss MS Society (SMSG). Sanak L has no disclosures to report. Von Wyl V has no disclosures to report. Chan A has received speakers’/board honoraria from Actelion (Janssen/J&J), Almirall, Bayer, Biogen, Celgene (BMS), Genzyme, Merck KGaA (Darmstadt, Germany), Novartis, Roche, and Teva, all for hospital research funds. He received research support from Biogen, Genzyme, and UCB, the European Union, and the Swiss National Foundation. He serves as associate editor of the European Journal of Neurology, on the editorial board for Clinical and Translational Neuroscience and as topic editor for the Journal of International Medical Research. Stanikic M reports employment by Roche branch in Serbia, Roche d.o.o. from February 2019 to February 2020. Zina-Mary Manjaly has no disclosures to report. Zecca C is recipient of a grant for senior reseachers provided by AFRI (Area Formazione accademica, Ricerca e Innovazione), EOC. Ente Ospedaliero Cantonale (employer) received compensation for C.Z.’s speaking activities, consulting fees, or research grants from Almirall, Biogen Idec, Bristol Meyer Squibb, Lundbeck, Merck, Novartis, Sanofi, Teva Pharma, Roche. Calabrese P. has received speakers’/board honoraria from Almirall, Biogen, Celgene (BMS), Genzyme, Novartis, Roche, Schwabe and Teva., (Copyright © 2022 The Author(s). Published by Elsevier B.V. All rights reserved.)

The aim of our study was to investigate whether self-reported feeling of loneliness (FoL) and COVID-19-specific health anxiety were associated with the presence of depressive symptoms during the first coronavirus disease 2019 (COVID-19) wave. Questionnaires of 603 persons of the Swiss Multiple Sclerosis Registry (SMSR) were cross-sectionally analyzed using descriptive and multivariable regression methods. The survey response rate was 63.9%. Depressive symptoms were assessed by the Beck Depression Inventory-Fast Screen (BDI-FS). COVID-19-specific health anxiety and FoL were measured using two 5-item Likert scaled pertinent questions. High scoring FoL (2.52, 95% confidence interval (CI) (2.06-2.98)) and/or COVID-19 specific health anxiety (1.36, 95% CI (0.87-1.85)) were significantly associated with depressive symptoms. Further stratification analysis showed that the impact of FoL on depressive symptoms affected all age groups. However, it was more pronounced in younger PwMS, whereas an impact of COVID-19 specific health anxiety on depressive symptoms was particularly observed in middle-aged PwMS. FoL and COVID-19-specific health anxiety were age-dependently associated with depressive symptoms during the first COVID-19 wave in Switzerland. Our findings could guide physicians, health authorities, and self-help groups to better accompany PwMS in times of public health crises., (© 2022. The Author(s).)

Objective: To compare and characterize major depressive disorder (MDD) subtypes (i.e., pure atypical, pure melancholic and mixed atypical-melancholic) and depression symptoms in persons with multiple sclerosis (PwMS) with persons without MS (Pw/oMS) fulfilling the DSM-5 criteria for a past 12-month MDD., Methods: MDD in PwMS (n = 92) from the Swiss Multiple Sclerosis Registry was compared with Pw/oMS (n = 277) from a Swiss community-based study. Epidemiological MDD diagnoses were based on the Mini-SPIKE (shortened form of the Structured Psychopathological Interview and Rating of the Social Consequences for Epidemiology). Logistic and multinomial regression analyses (adjusted for sex, age, civil status, depression and severity) were computed for comparisons and characterization. Latent class analysis (LCA) was conducted to empirically identify depression subtypes in PwMS., Results: PwMS had a higher risk for the mixed atypical-melancholic MDD subtype (OR = 2.22, 95% CI = 1.03-4.80) compared to Pw/oMS. MDD in PwMS was specifically characterized by a higher risk of the two somatic atypical depression symptoms 'weight gain' (OR = 6.91, 95% CI = 2.20-21.70) and 'leaden paralysis' (OR = 3.03, 95% CI = 1.35-6.82) and the symptom 'irritable/angry' (OR = 3.18, 95% CI = 1.08-9.39)., Conclusions: MDD in PwMS was characterized by a higher risk for specific somatic atypical depression symptoms and the mixed atypical-melancholic MDD subtype. The pure atypical MDD subtype, however, did not differentiate between PwMS and Pw/oMS. Given the high phenomenological overlap with MS symptoms, the mixed atypical-melancholic MDD subtype represents a particular diagnostic challenge., (Copyright © 2021 The Authors. Published by Elsevier Inc. All rights reserved.)

Background: Diagnosing multiple sclerosis (MS) early is crucial to avoid future disability. However, potentially preventable delays in the diagnostic cascade from contact with a physician to definite diagnosis still occur and their causes are still unclear., Objective: To identify the possible causes of delays in the diagnostic process., Methods: We analyzed the data of the Swiss MS Registry. With logistic regression, we modeled the time from the first contact to the first consultation (contact-to-evaluation time, ⩽1 month/>1 month) and the evaluation-to-diagnosis time (⩽6 months/>6 months). Potential factors were health system characteristics, sociodemographic variables, first symptoms, and MS type., Results: We included 522 participants. Mostly, general practitioners (67%) were contacted first, without delaying the diagnosis. In contrast, first symptoms and MS type were the major contributors to delays: gait problems were associated with longer contact-to-evaluation times, depression as a concomitant symptom with longer evaluation-to-diagnosis times, and having primary progressive MS prolonged both phases. In addition, living in mountainous areas was associated with longer contact-to-evaluation times, whereas diagnosis after 2000 was associated with faster diagnoses., Conclusion: For a quicker diagnosis, awareness of MS as a differential diagnosis of gait disorders and the co-occurrence of depression at onset should be raised, and these symptoms should be attentively followed.

Background: MS symptoms affect many functional domains. Knowing the specific impact of symptoms on health-related quality of life (HRQoL) is vital for successful disease and symptom management in MS. We aimed at investigating how specific MS symptoms contribute to the disease burden in individuals and from a population perspective., Methods: We included 855 Swiss Multiple Sclerosis Registry participants with a relapsing-remitting form (RRMS) or a progressive form (PMS). HRQoL was measured with the EuroQol 5-Dimension EQ-5D-index and EQ-Visual Analogue Scale (EQ-VAS) on 0-100% scales. Their associations with 20 symptoms, socio-demographic and clinical information were explored in median regression models, stratified by RRMS and PMS., Results: We included 611 participants with RRMS and 244 with PMS. In RRMS, gait (-6.5%) and balance problems (-5.1%) had the largest EQ-5D-index reductions, and were also important at the population level (frequencies 45% and 52%). Fatigue, depression, and spasticity (frequencies 74.1%, 31%, 38%) also contributed to the population disease burden. In PMS, spasticity, paralysis, and bowel problems had the largest impact on EQ-5D-index, both at the individual and population levels. The largest impact on EQ-VAS at population level was associated in RRMS with balance problems, depression, dizziness, and spasticity, while in PMS with weakness, pain, and paralysis., Conclusions: While HRQoL at population level is most affected by balance problems, spasticity, and depression in RRMS, the biggest HRQoL losses in PMS are caused by spasticity, paralysis, weakness, and pain. Many symptoms with the largest effects in individuals substantially contribute to the population disease burden., (Copyright © 2018 Elsevier B.V. All rights reserved.)