{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,24]],"date-time":"2026-09-24T21:05:04Z","timestamp":1790283904815,"version":"4.1.0"},"reference-count":36,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2024,6,24]],"date-time":"2024-06-24T00:00:00Z","timestamp":1719187200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2024,6,24]],"date-time":"2024-06-24T00:00:00Z","timestamp":1719187200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Commun Med"],"abstract":"<jats:title>Abstract<\/jats:title><jats:sec>\n                <jats:title>Background<\/jats:title>\n                <jats:p>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\u00a0persons 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.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Methods<\/jats:title>\n                <jats:p>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.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>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.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusions<\/jats:title>\n                <jats:p>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.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1038\/s43856-024-00546-3","type":"journal-article","created":{"date-parts":[[2024,6,24]],"date-time":"2024-06-24T13:02:42Z","timestamp":1719234162000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":7,"title":["Natural language processing analysis of the theories of people with multiple sclerosis about causes of their disease"],"prefix":"10.1038","volume":"4","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-9662-5245","authenticated-orcid":false,"given":"Christina","family":"Haag","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nina","family":"Steinemann","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Vladeta","family":"Ajdacic-Gross","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jonas Tom Thadd\u00e4us","family":"Schlomberg","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Benjamin Victor","family":"Ineichen","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mina","family":"Staniki\u0107","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Holger","family":"Dressel","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3319-1125","authenticated-orcid":false,"given":"Paola","family":"Daniore","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Patrick","family":"Roth","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sabin","family":"Ammann","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Pasquale","family":"Calabrese","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christian Philipp","family":"Kamm","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"J\u00fcrg","family":"Kesselring","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6963-8892","authenticated-orcid":false,"given":"Jens","family":"Kuhle","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Chiara","family":"Zecca","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Milo Alan","family":"Puhan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8754-9797","authenticated-orcid":false,"given":"Viktor","family":"von Wyl","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2024,6,24]]},"reference":[{"key":"546_CR1","doi-asserted-by":"publisher","first-page":"765","DOI":"10.1001\/jama.2020.26858","volume":"325","author":"MP McGinley","year":"2021","unstructured":"McGinley, M. P., Goldschmidt, C. H. & Rae-Grant, A. D. Diagnosis and treatment of multiple sclerosis: a review. JAMA 325, 765 (2021).","journal-title":"JAMA"},{"key":"546_CR2","doi-asserted-by":"publisher","first-page":"e1003926","DOI":"10.1371\/journal.pgen.1003926","volume":"9","author":"NA Patsopoulos","year":"2013","unstructured":"Patsopoulos, N. A. et al. Fine-mapping the genetic association of the major histocompatibility complex in multiple sclerosis: HLA and Non-HLA Effects. PLoS Genet. 9, e1003926 (2013).","journal-title":"PLoS Genet"},{"key":"546_CR3","doi-asserted-by":"publisher","first-page":"727","DOI":"10.1016\/S1474-4422(10)70094-6","volume":"9","author":"SV Ramagopalan","year":"2010","unstructured":"Ramagopalan, S. V., Dobson, R., Meier, U. C. & Giovannoni, G. Multiple sclerosis: risk factors, prodromes, and potential causal pathways. Lancet Neurol. 9, 727\u2013739 (2010).","journal-title":"Lancet Neurol."},{"key":"546_CR4","doi-asserted-by":"publisher","first-page":"263","DOI":"10.1016\/S1474-4422(14)70267-4","volume":"14","author":"L Belbasis","year":"2015","unstructured":"Belbasis, L., Bellou, V., Evangelou, E., Ioannidis, J. P. A. & Tzoulaki, I. Environmental risk factors and multiple sclerosis: an umbrella review of systematic reviews and meta-analyses. Lancet Neurol. 14, 263\u2013273 (2015).","journal-title":"Lancet Neurol."},{"key":"546_CR5","doi-asserted-by":"publisher","first-page":"e16149","DOI":"10.1371\/journal.pone.0016149","volume":"6","author":"AE Handel","year":"2011","unstructured":"Handel, A. E. et al. Smoking and multiple sclerosis: an updated meta-analysis. PLoS ONE 6, e16149 (2011).","journal-title":"PLoS ONE"},{"key":"546_CR6","doi-asserted-by":"crossref","unstructured":"Munger, K. L., Levin, L. I., Hollis, B. W., Howard, N. S. & Ascherio, A. Serum 25-Hydroxyvitamin D Levels and Risk of Multiple Sclerosis. JAMA, 296, 2832\u20132838 (2006).","DOI":"10.1001\/jama.296.23.2832"},{"key":"546_CR7","doi-asserted-by":"publisher","first-page":"1162","DOI":"10.1177\/1352458518783343","volume":"25","author":"LG Gallagher","year":"2019","unstructured":"Gallagher, L. G. et al. Lifetime exposure to ultraviolet radiation and the risk of multiple sclerosis in the US radiologic technologists cohort study. Mult. Scler. 25, 1162\u20131169 (2019).","journal-title":"Mult. Scler."},{"key":"546_CR8","doi-asserted-by":"publisher","first-page":"296","DOI":"10.1126\/science.abj8222","volume":"375","author":"K Bjornevik","year":"2022","unstructured":"Bjornevik, K. et al. Longitudinal analysis reveals high prevalence of Epstein-Barr virus associated with multiple sclerosis. Science 375, 296\u2013301 (2022).","journal-title":"Science"},{"key":"546_CR9","doi-asserted-by":"publisher","first-page":"354","DOI":"10.1177\/109019817400200407","volume":"2","author":"M Becker","year":"1974","unstructured":"Becker, M., Drachman, R. & Kirscht, J. The health belief model and preventative health behavior. Health Educ. Monogr. 2, 354\u2013386 (1974).","journal-title":"Health Educ. Monogr."},{"key":"546_CR10","doi-asserted-by":"publisher","first-page":"33","DOI":"10.1007\/s10880-015-9425-8","volume":"23","author":"M Bassi","year":"2016","unstructured":"Bassi, M. et al. Illness perception and well-being among persons with multiple sclerosis and their caregivers. J. Clin. Psychol. Med. Settings 23, 33\u201352 (2016).","journal-title":"J. Clin. Psychol. Med. Settings"},{"key":"546_CR11","doi-asserted-by":"publisher","first-page":"149","DOI":"10.1007\/s10880-019-09692-6","volume":"28","author":"M Bassi","year":"2021","unstructured":"Bassi, M. et al. The contribution of illness beliefs, coping strategies, and social support to perceived physical health and fatigue in multiple sclerosis. J. Clin. Psychol. Med. Settings 28, 149\u2013160 (2021).","journal-title":"J. Clin. Psychol. Med. Settings"},{"key":"546_CR12","doi-asserted-by":"publisher","first-page":"1161","DOI":"10.1037\/0003-066X.38.11.1161","volume":"38","author":"SE Taylor","year":"1983","unstructured":"Taylor, S. E. Adjustment to threatening events: A theory of cognitive adaptation. Am. Psychol. 38, 1161 (1983).","journal-title":"Am. Psychol."},{"key":"546_CR13","doi-asserted-by":"publisher","first-page":"172","DOI":"10.12968\/bjnn.2013.9.4.172","volume":"9","author":"HR Wilkinson","year":"2013","unstructured":"Wilkinson, H. R. & das Nair, R. The psychological impact of the unpredictability of multiple sclerosis: a qualitative literature meta-synthesis. Br. J. Neurosci. Nurs. 9, 172\u2013178 (2013).","journal-title":"Br. J. Neurosci. Nurs."},{"key":"546_CR14","doi-asserted-by":"publisher","DOI":"10.1186\/s40537-019-0255-7","volume":"6","author":"CB Asmussen","year":"2019","unstructured":"Asmussen, C. B. & M\u00f8ller, C. Smart literature review: a practical topic modelling approach to exploratory literature review. J. Big Data 6, 93 (2019).","journal-title":"J. Big Data"},{"key":"546_CR15","doi-asserted-by":"publisher","first-page":"e0000305","DOI":"10.1371\/journal.pdig.0000305","volume":"2","author":"C Haag","year":"2023","unstructured":"Haag, C. et al. Blending citizen science with natural language processing and machine learning: Understanding the experience of living with multiple sclerosis. PLOS Digit Health 2, e0000305 (2023).","journal-title":"PLOS Digit Health"},{"key":"546_CR16","doi-asserted-by":"publisher","first-page":"e37945","DOI":"10.2196\/37945","volume":"10","author":"D Chiavi","year":"2022","unstructured":"Chiavi, D. et al. The real-world experiences of persons with multiple sclerosis during the first COVID-19 lockdown: application of natural language processing. JMIR Med. Inf. 10, e37945 (2022).","journal-title":"JMIR Med. Inf."},{"key":"546_CR17","doi-asserted-by":"publisher","first-page":"975","DOI":"10.1136\/jnnp-2022-330755","volume":"94","author":"JA Campbell","year":"2023","unstructured":"Campbell, J. A. et al. Using qualitative free-text data to investigate the lived experience of the COVID-19 pandemic for a large cohort of Australians with different multiple sclerosis related disability levels. J. Neurol. Neurosurg. Psychiatry 94, 975\u2013983 (2023).","journal-title":"J. Neurol. Neurosurg. Psychiatry"},{"key":"546_CR18","unstructured":"Grootendorst, M. BERTopic: Neural topic modeling with a class-based TF-IDF procedure. arXiv: 2203.05794 https:\/\/arxiv.org\/abs\/2203.05794 (2022)."},{"key":"546_CR19","unstructured":"Vaswani, A. et al. Attention is all you need. Adv. Neural Inf. Process. Syst. 30, 5998\u20136008 (2017)."},{"key":"546_CR20","doi-asserted-by":"publisher","first-page":"886498","DOI":"10.3389\/fsoc.2022.886498","volume":"7","author":"R Egger","year":"2022","unstructured":"Egger, R. & Yu, J. A Topic Modeling Comparison Between LDA, NMF, Top2Vec, and BERTopic to Demystify Twitter Posts. Front. Sociol. 7, 886498 (2022).","journal-title":"Front. Sociol."},{"key":"546_CR21","doi-asserted-by":"publisher","DOI":"10.1186\/s12883-018-1118-0","volume":"18","author":"N Steinemann","year":"2018","unstructured":"Steinemann, N. et al. The Swiss Multiple Sclerosis Registry (SMSR): study protocol of a participatory, nationwide registry to promote epidemiological and patient-centered MS research. BMC Neurol. 18, 111 (2018).","journal-title":"BMC Neurol."},{"key":"546_CR22","unstructured":"Wolf, T. et al. HuggingFace\u2019s Transformers: State-of-the-art Natural Language Processing. arXiv:1910.03771 (2020)."},{"key":"546_CR23","unstructured":"Reimers, N. Sentence-transformers: paraphrase-multilingual-MiniLM-L12-v2. https:\/\/huggingface.co\/sentence-transformers\/paraphrase-multilingual-MiniLM-L12-v2 (2023)."},{"key":"546_CR24","doi-asserted-by":"crossref","unstructured":"McInnes, L., Healy, J., Saul N. & Gro\u00dfberger, L. UMAP: Uniform Manifold Approximation and Projection. J. Open Source Soft. 3, 861 (2018).","DOI":"10.21105\/joss.00861"},{"key":"546_CR25","unstructured":"McInnes, L., Healy, J. & Astels, S. Soft Clustering for HDBSCAN. https:\/\/hdbscan.readthedocs.io\/en\/latest\/soft_clustering.html (2023)."},{"key":"546_CR26","first-page":"2825","volume":"12","author":"F Pedregosa","year":"2011","unstructured":"Pedregosa, F. et al. Scikit-learn: Machine Learning in Python. J. Mach. Learn. Res. 12, 2825\u20132830 (2011).","journal-title":"J. Mach. Learn. Res."},{"key":"546_CR27","unstructured":"spaCy. spacy\/de_dep_news_trf. https:\/\/huggingface.co\/spacy\/de_dep_news_trf (2022)."},{"key":"546_CR28","unstructured":"Grootendorst, M. BERTopic - MaximalMarginalRelevance https:\/\/maartengr.github.io\/BERTopic\/api\/representation\/mmr.html (2023)."},{"key":"546_CR29","unstructured":"Mueller, A. WordCloud for Python documentation https:\/\/amueller.github.io\/word_cloud\/ (2020)."},{"key":"546_CR30","doi-asserted-by":"publisher","first-page":"703","DOI":"10.1038\/nmeth.3968","volume":"13","author":"J Lever","year":"2016","unstructured":"Lever, J., Krzywinski, M. & Altman, N. Points of significance: model selection and overfitting. Nat. methods 13, 703\u2013705 (2016).","journal-title":"Nat. methods"},{"key":"546_CR31","doi-asserted-by":"publisher","DOI":"10.1186\/s12883-021-02267-9","volume":"21","author":"N Ehtesham","year":"2021","unstructured":"Ehtesham, N., Rafie, M. Z. & Mosallaei, M. The global prevalence of familial multiple sclerosis: an updated systematic review and meta-analysis. BMC Neurol. 21, 246 (2021).","journal-title":"BMC Neurol."},{"key":"546_CR32","doi-asserted-by":"publisher","first-page":"1543","DOI":"10.1007\/s10072-015-2326-7","volume":"36","author":"T Zhu","year":"2015","unstructured":"Zhu, T. et al. Association between alcohol consumption and multiple sclerosis: a meta-analysis of observational studies. Neurol. Sci. 36, 1543\u20131550 (2015).","journal-title":"Neurol. Sci."},{"key":"546_CR33","doi-asserted-by":"crossref","unstructured":"Jacobs, B. M., Giovannoni, G., Cuzick, J. & Dobson, R. Systematic review and meta-analysis of the association between Epstein\u2013Barr virus, multiple sclerosis and other risk factors. Multiple Sclerosis J. 26, 1281\u20131297 (2000).","DOI":"10.1177\/1352458520907901"},{"key":"546_CR34","doi-asserted-by":"publisher","first-page":"2388","DOI":"10.1001\/jama.2018.7028","volume":"319","author":"H Song","year":"2018","unstructured":"Song, H. et al. Association of stress-related disorders with subsequent autoimmune disease. JAMA 319, 2388 (2018).","journal-title":"JAMA"},{"key":"546_CR35","doi-asserted-by":"publisher","first-page":"243","DOI":"10.1038\/nri1571","volume":"5","author":"R Glaser","year":"2005","unstructured":"Glaser, R. & Kiecolt-Glaser, J. K. Stress-induced immune dysfunction: implications for health. Nat. Rev. Immunol. 5, 243\u2013251 (2005).","journal-title":"Nat. Rev. Immunol."},{"key":"546_CR36","doi-asserted-by":"publisher","first-page":"e38709","DOI":"10.2196\/38709","volume":"10","author":"C Sieber","year":"2022","unstructured":"Sieber, C. et al. Electronic health diary campaigns to complement longitudinal assessments in persons with multiple sclerosis: nested observational study. JMIR Mhealth Uhealth 10, e38709 (2022).","journal-title":"JMIR Mhealth Uhealth"}],"container-title":["Communications Medicine"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.nature.com\/articles\/s43856-024-00546-3.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/www.nature.com\/articles\/s43856-024-00546-3","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/www.nature.com\/articles\/s43856-024-00546-3.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,6,24]],"date-time":"2024-06-24T13:06:08Z","timestamp":1719234368000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.nature.com\/articles\/s43856-024-00546-3"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,6,24]]},"references-count":36,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2024,12]]}},"alternative-id":["546"],"URL":"https:\/\/doi.org\/10.1038\/s43856-024-00546-3","relation":{},"ISSN":["2730-664X"],"issn-type":[{"value":"2730-664X","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,6,24]]},"assertion":[{"value":"24 August 2023","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"5 June 2024","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"24 June 2024","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"The authors declare no competing interests.","order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"122"}}