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Narratives followed a structured outline according to the time: yesterday-today-tomorrow, to capture all disease phases.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>Twenty-five patients diagnosed with NMOSD, ten caregivers and 13 healthcare providers participated in the research. Patients reported symptoms limiting their daily activities and strongly impacting their social dimension. We noticed improvements across disease duration, whilst the persistence of limitations was recurrent in patients with longer diagnoses.<\/jats:p>\n                <jats:p>Caregivers\u2019 narratives mainly share experiences of their daily life changes, the burden of the caregiving role and the solutions identified, if any. Healthcare providers defined their role as a guide.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusion<\/jats:title>\n                <jats:p>Limitations in activities are prominent in the lives of people with NMOSD, along with fatigue. Family members are the weakest link in the chain and need information and support. Healthcare professionals are attentive to the helping dimension.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1007\/s10072-023-07146-4","type":"journal-article","created":{"date-parts":[[2023,11,3]],"date-time":"2023-11-03T00:04:20Z","timestamp":1698969860000},"page":"1589-1597","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["Perspectives on Neuromyelitis Optica Spectrum Disorders, the Narrative Medicine contribution to care"],"prefix":"10.1007","volume":"45","author":[{"given":"Massimo","family":"Filippi","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Giovanna","family":"Borriello","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Francesco","family":"Patti","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Matilde","family":"Inglese","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Maria","family":"Trojano","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Fabiana","family":"Marinelli","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Clara","family":"Chisari","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Pietro","family":"Iaffaldano","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Chiara","family":"Zanetta","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Paola","family":"Chesi","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3464-7318","authenticated-orcid":false,"given":"Roberta","family":"Termini","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Maria Giulia","family":"Marini","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"297","published-online":{"date-parts":[[2023,11,3]]},"reference":[{"key":"7146_CR1","unstructured":"Portale di informazione dell\u2019Osservatorio delle Malattie Rare https:\/\/www.osservatoriomalattierare.it\/malattierare\/miastenia"},{"key":"7146_CR2","doi-asserted-by":"publisher","first-page":"206","DOI":"10.1002\/ana.24554","volume":"79","author":"I Kleiter","year":"2016","unstructured":"Kleiter I, Gahlen A, Borisow N et al (2016) Neuromyelitis optica: evaluation of 871 attacks and 1,153 treatment courses. 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All participants were informed of the research aim and submitted their narratives voluntarily. Written informed consent was obtained in compliance with current Italian data privacy laws [] and the General Data Protection Regulation of the European Union 2016\/679 []. No patient-sensitive data were reported. ISTUD researchers received the requested sociodemographic information and narratives with no track of the respondents\u2019 source data. The Ethics Committee of the IRCCS San Raffaele Hospital in Milan approved the project.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval"}},{"value":"None","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Conflict of Interest"}}]}}