Real-world patterns in remote longitudinal study participation: A study of the Swiss Multiple Sclerosis Registry.

Remote longitudinal studies are on the rise and promise to increase reach and reduce participation barriers in chronic disease research. However, maintaining long-term retention in these studies remains challenging. Early identification of participants with different patterns of long-term retention offers the opportunity for tailored survey adaptations. Using data from the online arm of the Swiss Multiple Sclerosis Registry (SMSR), we assessed sociodemographic, health-related, and daily-life related baseline variables against measures of long-term retention in the follow-up surveys through multivariable logistic regressions and unsupervised clustering analyses. We further explored follow-up survey completion measures against survey requirements to inform future survey designs. Our analysis included data from 1,757 participants who completed a median of 4 (IQR 2-8) follow-up surveys after baseline with a maximum of 13 possible surveys. Survey start year, age, citizenship, MS type, symptom burden and independent driving were significant predictors of long-term retention at baseline. Three clusters of participants emerged, with no differences in long-term retention outcomes revealed across the clusters. Exploratory assessments of follow-up surveys suggest possible trends in increased survey complexity with lower rates of survey completion. Our findings offer insights into characteristics associated with long-term retention in remote longitudinal studies, yet they also highlight the possible influence of various unexplored factors on retention outcomes. Future studies should incorporate additional objective measures that reflect participants' individual contexts to understand their ability to remain engaged long-term and inform survey adaptations accordingly.

Natural language processing analysis of the theories of people with multiple sclerosis about causes of their disease.

BACKGROUND: While potential risk factors for multiple sclerosis (MS) have been extensively researched, it remains unclear how persons with MS theorize about their MS. Such theories may affect mental health and treatment adherence. Using natural language processing techniques, we investigated large-scale text data about theories that persons with MS have about the causes of their disease. We examined the topics into which their theories could be grouped and the prevalence of each theory topic. METHODS: A total of 486 participants of the Swiss MS Registry longitudinal citizen science project provided text data on their theories about the etiology of MS. We used the transformer-based BERTopic Python library for topic modeling to identify underlying topics. We then conducted an in-depth characterization of the topics and assessed their prevalence. RESULTS: The topic modeling analysis identifies 19 distinct topics that participants theorize as causal for their MS. The topics most frequently cited are Mental Distress (31.5%), Stress (Exhaustion, Work) (29.8%), Heredity/Familial Aggregation (27.4%), and Diet, Obesity (16.0%). The 19 theory topics can be grouped into four high-level categories: physical health (mentioned by 56.2% of all participants), mental health (mentioned by 53.7%), risk factors established in the scientific literature (genetics, Epstein-Barr virus, smoking, vitamin D deficiency/low sunlight exposure; mentioned by 47.7%), and fate/coincidence (mentioned by 3.1%). Our study highlights the importance of mental health issues for theories participants have about the causes of their MS. CONCLUSIONS: Our findings emphasize the importance of communication between healthcare professionals and persons with MS about the pathogenesis of MS, the scientific evidence base and mental health.

Multiple sclerosis (MS) is a disease that affects the brain and spinal cord, causing a wide range of symptoms. Our study investigated what people living with the disease think causes MS. We analyzed the replies given by 486 people who were questioned about their MS to look for patterns in the responses. We identified 19 distinct themes, notably mental and work-related stress, genetics, and dietary factors, which we grouped into 4 categories: physical health, mental health, established scientific risk factors, and chance. We found that mental health problems were viewed as a key factor for MS. Our work highlights the need for healthcare professionals to have transparent conversations with people with MS about what is known about the disease course and potential causes. In addition, it highlights the importance of fully informing and supporting people with MS regarding their mental health.

Association of age and disease duration with comorbidities and disability: A study of the Swiss Multiple Sclerosis Registry.

BACKGROUND: While comorbidities increase with age, duration of multiple sclerosis (MS) leads to disability accumulation in persons with MS. The influence of ageing vis-a-vis MS duration remains largely unexplored. We studied the independent associations of ageing and MS duration with disability and comorbidities in the Swiss MS Registry participants. METHODS: Self-reported data was cross-sectionally analyzed using confounder-adjusted logistic regression models for 6 outcomes: cancer, type 2 diabetes (T2D), hypertension, cardiac diseases, depression, and having at least moderate or severe gait disability. Using cubic splines, we explored non-linear changes in risk shapes. RESULTS: Among 1615 participants age was associated with cardiac diseases (OR 1.05, 95% CI [1.02, 2.08]), hypertension (OR 1.08, 95% CI [1.06, 2.10]), T2D (OR 1.10, 95%CI [1.05, 1.16]) and cancer (OR 1.04, 95% CI [1.01, 1.07]). MS duration was not associated with comorbidities, except for cardiac diseases (OR 1.03, 95% CI [1.00, 1.06]). MS duration and age were independently associated with having at least moderate gait disability (OR 1.06, 95% CI [1.04, 1.07]; OR 1.04, 95% CI [1.02, 1.05], respectively), and MS duration was associated with severe gait disability (OR 1.05, 95% CI [1.03, 1.08]). The spline analysis suggested a non-linear increase of having at least moderate gait disability with age. CONCLUSIONS: Presence of comorbidities was largely associated with age only. Having at least moderate gait disability was associated with both age and MS duration, while having severe gait disabity was associated with MS duration only.

Real-world disease-modifying therapy usage in persons with relapsing-remitting multiple sclerosis: Cross-sectional data from the Swiss Multiple Sclerosis Registry.

INTRODUCTION: Several disease-modifying therapies (DMTs), covering a broad spectrum of mechanisms of action, have been approved by regulatory agencies for the treatment of relapsing-remitting multiple sclerosis (RRMS). However, only little is known about the current real-world treatment situation in Switzerland. Based on data from a diverse population of 668 persons with RRMS from the Swiss Multiple Sclerosis Registry (SMSR), the present study aims to fill this gap with a descriptive, cross-sectional approach. METHODS: Data originated from the SMSR baseline questionnaire and follow-up surveys. Data on current health status and life situation in the last 6 months were extracted from the survey distributed throughout 2020 and 2021, while data on disease-modifying therapy (DMT) histories were included from preceding surveys. Initially, data was stratified into three DMT groups according to the current DMT status (NO (No DMT), CONTINUED (DMT started more than 6 months ago), and NEW (DMT started less than 6 months ago)). In a subsequent analysis, the sample was stratified into groups corresponding to the five most frequently prescribed DMTs. Self-reported outcomes including therapy discontinuation or interruption, relapses and side-effects in the last 6 months were analyzed per group. Life and health situation parameters were also determined and analyzed. RESULTS: The study population consisted of 445 (66.6%) individuals belonging to the CONTINUED, 84 (12.6%) to the NEW, and 139 (20.8%) to the NO group. Within the NO group, 24 (17.3%) reported relapses. Furthermore, self-reported relapses (28 (33.3%)), side-effects (39 (46.4%)), and treatment discontinuations or interruptions (30 (35.7%)) occurred more frequently in the NEW compared to the CONTINUED group (37 (8.3%), 125 (28.1%), 8 (1.8%), respectively). The three groups also differed with respect to age, time since diagnosis, number of symptoms, DMT history, and health-related quality of life. The five most frequently prescribed DMTs included fingolimod (33.4%), dimethyl fumarate (25.0%), ocrelizumab (23.6%), natalizumab (10.6%) and teriflunomide (7.5%). The frequency of self-reported relapses ranged from 9.7% to 13.6%. Notable differences were found in the number of self-reported side-effects, ranging from 9.1% with natalizumab to 56.7% with dimethyl fumarate. DISCUSSION: This cross-sectional analysis suggested that the majority of individuals with RRMS in Switzerland continuously receive tolerable DMT. However, groups not receiving DMT or struggling with side-effects or continued disease worsening while on DMT still persist. It is conceivable that the number of self-reported symptoms indicates the need for more detailed clarification of the DMT characteristics and expectations of treatment outcomes. Injectable DMTs no longer play a major role in the treatment of RRMS in Switzerland and a trend toward an early use of potent drugs is emerging.

Development and validation of the self-reported disability status scale (SRDSS) to estimate EDSS-categories.

BACKGROUND: Clinician-assessed Expanded Disease Status Scale (EDSS) is gold standard in clinical investigations but normally unavailable in population-based, patient-centred MS-studies. Our objective was to develop a self-reported gait measure reflecting EDSS-categories. METHODS: We developed the self-reported disability status scale (SRDSS) with three categories (≤3.5, 4-6.5, ≥7) based on three mobility-related questions. The SRDSS was determined for 173 persons with MS and validated against clinical EDSS to calculate sensitivity and specificity. RESULTS: Accuracy was 88.4% (153 correctly classified) and weighted kappa 0.73 (0.62-0.84). Sensitivity/specificity-pairs were 94.5%/77.8%, 69.0%/94.7% and 100%/98.2% for SRDSS ≤3.5, 4-6.5 and ≥7, respectively. CONCLUSIONS: Self-reported SRDSS approximates EDSS-categories well and fosters comparability between clinical and population-based studies.