19 results on '"Stanikić, Mina'
Search Results
2. Refining Established Practices for Research Question Definition to Foster Interdisciplinary Research Skills in a Digital Age: Consensus Study With Nominal Group Technique
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Jana Sedlakova, Mina Stanikić, Felix Gille, Jürgen Bernard, Andrea B Horn, Markus Wolf, Christina Haag, Joel Floris, Gabriela Morgenshtern, Gerold Schneider, Aleksandra Zumbrunn Wojczyńska, Corine Mouton Dorey, Dominik Alois Ettlin, Daniel Gero, Thomas Friemel, Ziyuan Lu, Kimon Papadopoulos, Sonja Schläpfer, Ning Wang, and Viktor von Wyl
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Special aspects of education ,LC8-6691 ,Medicine (General) ,R5-920 - Abstract
BackgroundThe increased use of digital data in health research demands interdisciplinary collaborations to address its methodological complexities and challenges. This often entails merging the linear deductive approach of health research with the explorative iterative approach of data science. However, there is a lack of structured teaching courses and guidance on how to effectively and constructively bridge different disciplines and research approaches. ObjectiveThis study aimed to provide a set of tools and recommendations designed to facilitate interdisciplinary education and collaboration. Target groups are lecturers who can use these tools to design interdisciplinary courses, supervisors who guide PhD and master’s students in their interdisciplinary projects, and principal investigators who design and organize workshops to initiate and guide interdisciplinary projects. MethodsOur study was conducted in 3 steps: (1) developing a common terminology, (2) identifying established workflows for research question formulation, and (3) examining adaptations of existing study workflows combining methods from health research and data science. We also formulated recommendations for a pragmatic implementation of our findings. We conducted a literature search and organized 3 interdisciplinary expert workshops with researchers at the University of Zurich. For the workshops and the subsequent manuscript writing process, we adopted a consensus study methodology. ResultsWe developed a set of tools to facilitate interdisciplinary education and collaboration. These tools focused on 2 key dimensions— content and curriculum and methods and teaching style—and can be applied in various educational and research settings. We developed a glossary to establish a shared understanding of common terminologies and concepts. We delineated the established study workflow for research question formulation, emphasizing the “what” and the “how,” while summarizing the necessary tools to facilitate the process. We propose 3 clusters of contextual and methodological adaptations to this workflow to better integrate data science practices: (1) acknowledging real-life constraints and limitations in research scope; (2) allowing more iterative, data-driven approaches to research question formulation; and (3) strengthening research quality through reproducibility principles and adherence to the findable, accessible, interoperable, and reusable (FAIR) data principles. ConclusionsResearch question formulation remains a relevant and useful research step in projects using digital data. We recommend initiating new interdisciplinary collaborations by establishing terminologies as well as using the concepts of research tasks to foster a shared understanding. Our tools and recommendations can support academic educators in training health professionals and researchers for interdisciplinary digital health projects.
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- 2025
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3. Self-reports by persons with multiple sclerosis are an adequate surrogate for healthcare provider data on disease-modifying therapy and multiple sclerosis type
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Stanikić, Mina, Braun, Julia, Ajdacic-Gross, Vladeta, Manjaly, Zina-Mary, Yaldizli, Özgür, Ineichen, Benjamin Victor, Chan, Andrew, Kamm, Christian P., Iaquinto, Stefania, Gobbi, Claudio, Zecca, Chiara, Calabrese, Pasquale, and von Wyl, Viktor
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- 2023
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4. Experiences of persons with multiple sclerosis with the Covid-19 vaccination: A cross-sectional study of the Swiss Multiple Sclerosis Registry
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Stanikić, Mina, Twomey, Eric, Puhan, Milo A., Kamm, Christian P., Salmen, Anke, Ajdacic-Gross, Vladeta, Zecca, Chiara, Gobbi, Claudio, and von Wyl, Viktor
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- 2023
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5. Factors associated with material deprivation in persons with multiple sclerosis in Switzerland: Cross-sectional data from the Swiss Multiple Sclerosis Registry
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Sanak, Lisa, Kamm, Christian P., Chan, Andrew, Stanikić, Mina, Manjaly, Zina M, Zecca, Chiara, Calabrese, Pasquale, and von Wyl, Viktor
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- 2023
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6. Engagement in volunteering activities by persons with multiple sclerosis in Switzerland
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Mettler, Mathias, Stanikić, Mina, Schwegler, Urban, Sieber, Chloé, Ajdacic-Gross, Vladeta, Rodgers, Stephanie, Haag, Christina, Zecca, Chiara, Calabrese, Pasquale, Kägi, Susanne, Rapold, Irene, and von Wyl, Viktor
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- 2023
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7. Association of age and disease duration with comorbidities and disability: A study of the Swiss Multiple Sclerosis Registry
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Stanikić, Mina, Salmen, Anke, Chan, Andrew, Kuhle, Jens, Kaufmann, Marco, Ammann, Sabin, Schafroth, Sandra, Rodgers, Stephanie, Haag, Christina, Pot, Caroline, Kamm, Christian P, Zecca, Chiara, Gobbi, Claudio, Calabrese, Pasquale, Manjaly, Zina-Mary, and von Wyl, Viktor
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- 2022
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8. Real-world disease-modifying therapy usage in persons with relapsing-remitting multiple sclerosis: Cross-sectional data from the Swiss Multiple Sclerosis Registry
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Bossart, Jonas, Kamm, Christian P., Kaufmann, Marco, Stanikić, Mina, Puhan, Milo A., Kesselring, Jürg, Zecca, Chiara, Gobbi, Claudio, Rapold, Irene, Kurmann, Roland, Ammann, Sabin, and von Wyl, Viktor
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- 2022
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9. The Real-World Experiences of Persons With Multiple Sclerosis During the First COVID-19 Lockdown: Application of Natural Language Processing
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Deborah Chiavi, Christina Haag, Andrew Chan, Christian Philipp Kamm, Chloé Sieber, Mina Stanikić, Stephanie Rodgers, Caroline Pot, Jürg Kesselring, Anke Salmen, Irene Rapold, Pasquale Calabrese, Zina-Mary Manjaly, Claudio Gobbi, Chiara Zecca, Sebastian Walther, Katharina Stegmayer, Robert Hoepner, Milo Puhan, and Viktor von Wyl
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Computer applications to medicine. Medical informatics ,R858-859.7 - Abstract
BackgroundThe increasing availability of “real-world” data in the form of written text holds promise for deepening our understanding of societal and health-related challenges. Textual data constitute a rich source of information, allowing the capture of lived experiences through a broad range of different sources of information (eg, content and emotional tone). Interviews are the “gold standard” for gaining qualitative insights into individual experiences and perspectives. However, conducting interviews on a large scale is not always feasible, and standardized quantitative assessment suitable for large-scale application may miss important information. Surveys that include open-text assessments can combine the advantages of both methods and are well suited for the application of natural language processing (NLP) methods. While innovations in NLP have made large-scale text analysis more accessible, the analysis of real-world textual data is still complex and requires several consecutive steps. ObjectiveWe developed and subsequently examined the utility and scientific value of an NLP pipeline for extracting real-world experiences from textual data to provide guidance for applied researchers. MethodsWe applied the NLP pipeline to large-scale textual data collected by the Swiss Multiple Sclerosis (MS) registry. Such textual data constitute an ideal use case for the study of real-world text data. Specifically, we examined 639 text reports on the experienced impact of the first COVID-19 lockdown from the perspectives of persons with MS. The pipeline has been implemented in Python and complemented by analyses of the “Linguistic Inquiry and Word Count” software. It consists of the following 5 interconnected analysis steps: (1) text preprocessing; (2) sentiment analysis; (3) descriptive text analysis; (4) unsupervised learning–topic modeling; and (5) results interpretation and validation. ResultsA topic modeling analysis identified the following 4 distinct groups based on the topics participants were mainly concerned with: “contacts/communication;” “social environment;” “work;” and “errands/daily routines.” Notably, the sentiment analysis revealed that the “contacts/communication” group was characterized by a pronounced negative emotional tone underlying the text reports. This observed heterogeneity in emotional tonality underlying the reported experiences of the first COVID-19–related lockdown is likely to reflect differences in emotional burden, individual circumstances, and ways of coping with the pandemic, which is in line with previous research on this matter. ConclusionsThis study illustrates the timely and efficient applicability of an NLP pipeline and thereby serves as a precedent for applied researchers. Our study thereby contributes to both the dissemination of NLP techniques in applied health sciences and the identification of previously unknown experiences and burdens of persons with MS during the pandemic, which may be relevant for future treatment.
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- 2022
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10. Exploring the relationship between neurologists and older persons with multiple sclerosis through the lens of social support theory.
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Stanikić, Mina, Gille, Felix, Schlomberg, Jonas, Daniore, Paola, Kägi, Susanne, Chan, Andrew, Kamm, Christian P, Zecca, Chiara, Calabrese, Pasquale, Roth, Patrick, Baum, Claudia, Rapold, Irene, Puhan, Milo A, and von Wyl, Viktor
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OLDER people ,SOCIAL support ,PATIENTS' attitudes ,MULTIPLE sclerosis ,LIKERT scale - Abstract
Background: Although healthcare practitioners (HCPs) are a valuable source of social support, research on support provided by neurologists to older persons with multiple sclerosis (pwMS) remains limited. Objectives: To explore expectations of pwMS aged 55 years or older regarding MS care and to identify support types, met and unmet needs within their relationship with neurologists. Methods: Utilizing a mixed-methods approach, we analyzed survey data from Swiss Multiple Sclerosis Registry participants. Quantitative data included Likert scales gauging the importance of various aspects of MS care for pwMS both in and out of neurological care. Qualitative data were derived from three open-ended questions, focusing on neurologist-provided support for pwMS in neurological care. Data underwent descriptive and deductive thematic analysis, using Cutrona and Suhr framework for coding social support. Results: Among the 286 participants (median age 61.0 years, interquartile range (IQR) 57.0–66.0; median disease duration 23.5 years, IQR 15.0–31.0), 84.6% (N = 244) were under neurological care. Quantitative findings highlighted the significance of HCP expertise and consultation time. Qualitative analysis identified all social support domains in the neurologist–pwMS relationship, with informational support being most prevalent, followed by emotional support. Neurologists' expertise, availability, comprehensive advising, listening, and validation emerged as key themes. Unmet needs were relatively infrequent and concerned insufficient information on complementary medicine, empathy, and understanding of symptoms like fatigue. Conclusions: Older pwMS see neurologists as adequate providers of comprehensive support and particularly value neurologists' sufficient availability, informational and emotional support. Areas for improvement include attention to complementary medicine and empathy. [ABSTRACT FROM AUTHOR]
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- 2024
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11. A guide for a student-led doctoral-level qualitative methods short course in epidemiology: faculty and student perspectives
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Gille, Felix; https://orcid.org/0000-0002-2847-4633, Frei, Anja; https://orcid.org/0000-0002-7134-1000, Kaufmann, Marco; https://orcid.org/0000-0002-4810-7734, Lehmann, Anja, Muñoz Laguna, Javier; https://orcid.org/0000-0003-0332-5540, Papadopoulos, Kimon; https://orcid.org/0000-0002-7623-4298, Spörri, Angela, Stanikić, Mina; https://orcid.org/0000-0002-6477-7164, Tušl, Martin; https://orcid.org/0000-0001-5466-146X, Zavattaro, Federica, Puhan, Milo Alan; https://orcid.org/0000-0003-4721-1879, Gille, Felix; https://orcid.org/0000-0002-2847-4633, Frei, Anja; https://orcid.org/0000-0002-7134-1000, Kaufmann, Marco; https://orcid.org/0000-0002-4810-7734, Lehmann, Anja, Muñoz Laguna, Javier; https://orcid.org/0000-0003-0332-5540, Papadopoulos, Kimon; https://orcid.org/0000-0002-7623-4298, Spörri, Angela, Stanikić, Mina; https://orcid.org/0000-0002-6477-7164, Tušl, Martin; https://orcid.org/0000-0001-5466-146X, Zavattaro, Federica, and Puhan, Milo Alan; https://orcid.org/0000-0003-4721-1879
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Qualitative research and mixed methods are core competencies for epidemiologists. In response to the shortage of guidance on graduate course development, we wrote a course development guide aimed at faculty and students designing similar courses in epidemiology curricula. The guide combines established educational theory with faculty and student experiences from a recent introductory course for epidemiology and biostatistics doctoral students at the University of Zurich and Swiss Federal Institute of Technology, Zurich. We propose a student-centred course with inverse classroom teaching and practice exercises with faculty input. Integration of student input during the course development process helps align the course syllabus with student needs. The proposed course comprises six sessions that cover learning outcomes in comprehension, knowledge, application, analysis, synthesis and evaluation. Following an introductory session, the students engage in face-to-face interviews, focus group interviews, observational methods, analysis and how qualitative and quantitative methods are integrated in mixed methods. Furthermore, the course covers interviewer safety, research ethics, quality in qualitative research and a practice session focused on the use of interview hardware, including video and audio recorders. The student-led teaching characteristic of the course allows for an immersive and reflective teaching-learning environment. After implementation of the course and learning from faculty and student perspectives, we propose these additional foci: a student project to apply learned knowledge to a case study; integration in mixed-methods; and providing faculty a larger space to cover theory and field anecdotes.
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- 2024
12. A guide for a student-led doctoral-level qualitative methods short course in epidemiology: faculty and student perspectives.
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Gille, Felix, Frei, Anja, Kaufmann, Marco, Lehmann, Anja, Laguna, Javier Muñoz, Papadopoulos, Kimon, Spörri, Angela, Stanikić, Mina, Tušl, Martin, Zavattaro, Federica, and Puhan, Milo Alan
- Abstract
Qualitative research and mixed methods are core competencies for epidemiologists. In response to the shortage of guidance on graduate course development, we wrote a course development guide aimed at faculty and students designing similar courses in epidemiology curricula. The guide combines established educational theory with faculty and student experiences from a recent introductory course for epidemiology and biostatistics doctoral students at the University of Zurich and Swiss Federal Institute of Technology, Zurich. We propose a student-centred course with inverse classroom teaching and practice exercises with faculty input. Integration of student input during the course development process helps align the course syllabus with student needs. The proposed course comprises six sessions that cover learning outcomes in comprehension, knowledge, application, analysis, synthesis and evaluation. Following an introductory session, the students engage in face-to-face interviews, focus group interviews, observational methods, analysis and how qualitative and quantitative methods are integrated in mixed methods. Furthermore, the course covers interviewer safety, research ethics, quality in qualitative research and a practice session focused on the use of interview hardware, including video and audio recorders. The student-led teaching characteristic of the course allows for an immersive and reflective teaching-learning environment. After implementation of the course and learning from faculty and student perspectives, we propose these additional foci: a student project to apply learned knowledge to a case study; integration in mixed-methods; and providing faculty a larger space to cover theory and field anecdotes. [ABSTRACT FROM AUTHOR]
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- 2024
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13. Challenges and best practices for digital unstructured data enrichment in health research: A systematic narrative review
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Sarmiento, Raymond Francis, Sarmiento, R F ( Raymond Francis ), Sedlakova, Jana; https://orcid.org/0000-0002-6887-5941, Daniore, Paola, Horn Wintsch, Andrea, Wolf, Markus, Stanikić, Mina; https://orcid.org/0000-0002-6477-7164, Haag, Christina, Sieber, Chloé; https://orcid.org/0000-0002-6642-5082, Schneider, Gerold, Staub, Kaspar, Alois Ettlin, Dominik, Grübner, Oliver, Rinaldi, Fabio, von Wyl, Viktor; https://orcid.org/0000-0002-8754-9797, Sarmiento, Raymond Francis, Sarmiento, R F ( Raymond Francis ), Sedlakova, Jana; https://orcid.org/0000-0002-6887-5941, Daniore, Paola, Horn Wintsch, Andrea, Wolf, Markus, Stanikić, Mina; https://orcid.org/0000-0002-6477-7164, Haag, Christina, Sieber, Chloé; https://orcid.org/0000-0002-6642-5082, Schneider, Gerold, Staub, Kaspar, Alois Ettlin, Dominik, Grübner, Oliver, Rinaldi, Fabio, and von Wyl, Viktor; https://orcid.org/0000-0002-8754-9797
- Abstract
Digital data play an increasingly important role in advancing health research and care. However, most digital data in healthcare are in an unstructured and often not readily accessible format for research. Unstructured data are often found in a format that lacks standardization and needs significant preprocessing and feature extraction efforts. This poses challenges when combining such data with other data sources to enhance the existing knowledge base, which we refer to as digital unstructured data enrichment. Overcoming these methodological challenges requires significant resources and may limit the ability to fully leverage their potential for advancing health research and, ultimately, prevention, and patient care delivery. While prevalent challenges associated with unstructured data use in health research are widely reported across literature, a comprehensive interdisciplinary summary of such challenges and possible solutions to facilitate their use in combination with structured data sources is missing. In this study, we report findings from a systematic narrative review on the seven most prevalent challenge areas connected with the digital unstructured data enrichment in the fields of cardiology, neurology and mental health, along with possible solutions to address these challenges. Based on these findings, we developed a checklist that follows the standard data flow in health research studies. This checklist aims to provide initial systematic guidance to inform early planning and feasibility assessments for health research studies aiming combining unstructured data with existing data sources. Overall, the generality of reported unstructured data enrichment methods in the studies included in this review call for more systematic reporting of such methods to achieve greater reproducibility in future studies.
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- 2023
14. The Real-World Experiences of Persons With Multiple Sclerosis During the First COVID-19 Lockdown: Application of Natural Language Processing
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Chiavi, Deborah, primary, Haag, Christina, additional, Chan, Andrew, additional, Kamm, Christian Philipp, additional, Sieber, Chloé, additional, Stanikić, Mina, additional, Rodgers, Stephanie, additional, Pot, Caroline, additional, Kesselring, Jürg, additional, Salmen, Anke, additional, Rapold, Irene, additional, Calabrese, Pasquale, additional, Manjaly, Zina-Mary, additional, Gobbi, Claudio, additional, Zecca, Chiara, additional, Walther, Sebastian, additional, Stegmayer, Katharina, additional, Hoepner, Robert, additional, Puhan, Milo, additional, and von Wyl, Viktor, additional
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- 2022
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15. The Real-World Experiences of Persons With Multiple Sclerosis During the First COVID-19 Lockdown: Application of Natural Language Processing
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Chiavi, Deborah; https://orcid.org/0000-0003-0595-2054, Haag, Christina; https://orcid.org/0000-0002-9662-5245, Chan, Andrew; https://orcid.org/0000-0003-3434-7283, Kamm, Christian Philipp; https://orcid.org/0000-0002-3906-0161, Sieber, Chloé; https://orcid.org/0000-0002-6642-5082, Stanikić, Mina; https://orcid.org/0000-0002-6477-7164, Rodgers, Stephanie; https://orcid.org/0000-0003-2811-7991, Pot, Caroline; https://orcid.org/0000-0002-1146-3129, Kesselring, Jürg; https://orcid.org/0000-0002-8645-7364, Salmen, Anke; https://orcid.org/0000-0002-4751-299X, Rapold, Irene; https://orcid.org/0000-0001-5587-7510, Calabrese, Pasquale; https://orcid.org/0000-0003-3347-5187, Manjaly, Zina-Mary; https://orcid.org/0000-0002-9217-1688, Gobbi, Claudio; https://orcid.org/0000-0002-7554-0664, Zecca, Chiara; https://orcid.org/0000-0002-9990-3431, Walther, Sebastian; https://orcid.org/0000-0003-4026-3561, Stegmayer, Katharina; https://orcid.org/0000-0002-4611-8966, Hoepner, Robert; https://orcid.org/0000-0002-0115-7021, Puhan, Milo; https://orcid.org/0000-0003-4721-1879, von Wyl, Viktor; https://orcid.org/0000-0002-8754-9797, Chiavi, Deborah; https://orcid.org/0000-0003-0595-2054, Haag, Christina; https://orcid.org/0000-0002-9662-5245, Chan, Andrew; https://orcid.org/0000-0003-3434-7283, Kamm, Christian Philipp; https://orcid.org/0000-0002-3906-0161, Sieber, Chloé; https://orcid.org/0000-0002-6642-5082, Stanikić, Mina; https://orcid.org/0000-0002-6477-7164, Rodgers, Stephanie; https://orcid.org/0000-0003-2811-7991, Pot, Caroline; https://orcid.org/0000-0002-1146-3129, Kesselring, Jürg; https://orcid.org/0000-0002-8645-7364, Salmen, Anke; https://orcid.org/0000-0002-4751-299X, Rapold, Irene; https://orcid.org/0000-0001-5587-7510, Calabrese, Pasquale; https://orcid.org/0000-0003-3347-5187, Manjaly, Zina-Mary; https://orcid.org/0000-0002-9217-1688, Gobbi, Claudio; https://orcid.org/0000-0002-7554-0664, Zecca, Chiara; https://orcid.org/0000-0002-9990-3431, Walther, Sebastian; https://orcid.org/0000-0003-4026-3561, Stegmayer, Katharina; https://orcid.org/0000-0002-4611-8966, Hoepner, Robert; https://orcid.org/0000-0002-0115-7021, Puhan, Milo; https://orcid.org/0000-0003-4721-1879, and von Wyl, Viktor; https://orcid.org/0000-0002-8754-9797
- Abstract
BACKGROUND The increasing availability of "real-world" data in the form of written text holds promise for deepening our understanding of societal and health-related challenges. Textual data constitute a rich source of information, allowing the capture of lived experiences through a broad range of different sources of information (eg, content and emotional tone). Interviews are the "gold standard" for gaining qualitative insights into individual experiences and perspectives. However, conducting interviews on a large scale is not always feasible, and standardized quantitative assessment suitable for large-scale application may miss important information. Surveys that include open-text assessments can combine the advantages of both methods and are well suited for the application of natural language processing (NLP) methods. While innovations in NLP have made large-scale text analysis more accessible, the analysis of real-world textual data is still complex and requires several consecutive steps. OBJECTIVE We developed and subsequently examined the utility and scientific value of an NLP pipeline for extracting real-world experiences from textual data to provide guidance for applied researchers. METHODS We applied the NLP pipeline to large-scale textual data collected by the Swiss Multiple Sclerosis (MS) registry. Such textual data constitute an ideal use case for the study of real-world text data. Specifically, we examined 639 text reports on the experienced impact of the first COVID-19 lockdown from the perspectives of persons with MS. The pipeline has been implemented in Python and complemented by analyses of the "Linguistic Inquiry and Word Count" software. It consists of the following 5 interconnected analysis steps: (1) text preprocessing; (2) sentiment analysis; (3) descriptive text analysis; (4) unsupervised learning-topic modeling; and (5) results interpretation and validation. RESULTS A topic modeling analysis identified the following 4 distinct groups based on
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- 2022
16. Factors associated with material deprivation in persons with multiple sclerosis in Switzerland: Cross-sectional data from the Swiss Multiple Sclerosis Registry
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Sanak, Lisa, Kamm, Christian P, Chan, Andrew, Stanikić, Mina, Manjaly, Zina M, Zecca, Chiara, Calabrese, Pasquale, von Wyl, Viktor, Sanak, Lisa, Kamm, Christian P, Chan, Andrew, Stanikić, Mina, Manjaly, Zina M, Zecca, Chiara, Calabrese, Pasquale, and von Wyl, Viktor
- Abstract
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.
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- 2022
17. Engagement in volunteering activities by persons with multiple sclerosis in Switzerland
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Mettler, Mathias, Stanikić, Mina, Schwegler, Urban, Sieber, Chloé, Ajdacic-Gross, Vladeta, Rodgers, Stephanie, Haag, Christina, Zecca, Chiara, Calabrese, Pasquale, Kägi, Susanne, Rapold, Irene, von Wyl, Viktor, Mettler, Mathias, Stanikić, Mina, Schwegler, Urban, Sieber, Chloé, Ajdacic-Gross, Vladeta, Rodgers, Stephanie, Haag, Christina, Zecca, Chiara, Calabrese, Pasquale, Kägi, Susanne, Rapold, Irene, and von Wyl, Viktor
- Abstract
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 act
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- 2022
18. Association of age and disease duration with comorbidities and disability: A study of the Swiss Multiple Sclerosis Registry
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Mina Stanikić, Anke Salmen, Andrew Chan, Jens Kuhle, Marco Kaufmann, Sabin Ammann, Sandra Schafroth, Stephanie Rodgers, Christina Haag, Caroline Pot, Christian P Kamm, Chiara Zecca, Claudio Gobbi, Pasquale Calabrese, Zina-Mary Manjaly, Viktor von Wyl, University of Zurich, and von Wyl, Viktor
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Disability ,Heart Diseases ,Multiple sclerosis ,Comorbidity ,Ageing ,Disease duration ,11549 Institute of Implementation Science in Health Care ,610 Medicine & health ,10060 Epidemiology, Biostatistics and Prevention Institute (EBPI) ,General Medicine ,2728 Neurology (clinical) ,Diabetes Mellitus, Type 2 ,Neurology ,2808 Neurology ,Hypertension ,Humans ,Registries ,Neurology (clinical) ,Switzerland - Abstract
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., Multiple Sclerosis and Related Disorders, 67, ISSN:2211-0356, ISSN:2211-0348
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- 2022
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19. Rising Prevalence of Multiple Sclerosis in Switzerland: Results from the Swiss Multiple Sclerosis Registry.
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Iaquinto S, Chan A, Manjaly ZM, Stanikić M, Ineichen BV, Kuhle J, Haag C, Müller J, Yaldizli Ö, Kamm CP, Calabrese P, Zecca C, Magnusson T, Ammann S, Kesselring J, Baum C, Kaminski M, Puhan MA, and von Wyl V
- Abstract
Introduction: Understanding the prevalence of multiple sclerosis (MS) provides information for healthcare planning and helps identify trends and patterns of disease occurrence. For Switzerland, the number of persons with MS (pwMS) was last estimated at approximately 15,000 in 2016. The study's objectives were to update estimates of MS prevalence and characterise the change in MS prevalence in Switzerland between 2016 and 2021, the last year with complete administrative data., Methods: The Swiss MS Registry (SMSR) is an ongoing, longitudinal study in Switzerland. It has previously established a methodology to assess the epidemiology of MS in Switzerland by integrating SMSR data with administrative data on reimbursement approvals for disease-modifying therapies (DMTs). Subsequently, the benchmark-multiplier method is applied to the combined data. Using the same methodology, we calculated overall and sex- and age-specific prevalence rates for 2021. Furthermore, we descriptively analysed changes since 2016 by comparing the prevalence figures and demographic and clinical characteristics of pwMS in both years., Results: We estimated the population of pwMS in Switzerland at 18,140 (95% simulation interval: 17,550-18,750), corresponding to a period prevalence of 200.8-214.5/100,000 inhabitants. Peak prevalence was observed in the 50- to 55-year age group. Compared to 2016, the 2021 estimate corresponds to a 20% increase (n = 3,000). Extrapolating from Swiss population growth, we estimated that one-fifth of the observed prevalence increase may be attributed to a rising population. The proportion of pwMS in the age range from 50 to 64 (32.5% vs. 35.9%) and above 65 (8.0% vs. 11.1%) years increased. Consequently, the median (interquartile range) age increased from 47 (37-55) to 49 (38-57) years. The median age at diagnosis (36 [28-45] years) and the female-to-male ratio (2.7:1) remained stable since 2016. The proportion of pwMS treated with DMTs increased from 62.1% to 69.0%, with the largest change observed in infusion therapies (15.7% vs. 23.3%)., Conclusion: The estimated MS prevalence in Switzerland has increased since the previous estimate in 2016, with a shift in peak prevalence towards older ages. Population growth explained around one-fifth of this increase, thus leaving room for contributions by additional factors, which require further investigation. The rising MS prevalence has several implications for healthcare, research, and society., (© 2024 The Author(s). Published by S. Karger AG, Basel.)
- Published
- 2024
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