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We here present the overall study design and first results of <jats:sub>A<\/jats:sub>MY-NEED<jats:sub>S<\/jats:sub>, a research program aiming to systematically assess the needs of patients suffering from amyloidosis, their relatives and health care professionals (HCPs), and develop an amyloidosis-specific care approach.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Methods<\/jats:title>\n                <jats:p><jats:sub>A<\/jats:sub>MY-NEED<jats:sub>S<\/jats:sub> uses a mixed-methods approach including focus groups (step 1), a questionnaire-based broad evaluation within the local amyloidosis patient collective (step 2), and the development of a needs-adapted care concept (step 3).<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>Seven patients, six relatives and five HCPs participated in the focus groups (step 1). At the time of diagnosis, patients expressed the need of a smooth diagnostic process, possibly enhanced through improved awareness and better education of local HCPs. There was a strong wish to receive well-founded information and comprehensive support including companionship during medical visits, experience the feeling of being understood, find trust in that \u201ceverything possible\u201d is being done, and have effortless access to centre staff. In the course of the disease, patients favoured that the specialized centre should manage treatment coordination, monitoring and psychosocial support. The interface between centre and local HCPs was regarded of particular importance, requiring further investigation into its optimal design.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusions<\/jats:title>\n                <jats:p>Patients with amyloidosis express particular needs that should appropriately be considered in specifically tailored care concepts.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1186\/s13023-024-03052-w","type":"journal-article","created":{"date-parts":[[2024,2,10]],"date-time":"2024-02-10T13:02:42Z","timestamp":1707570162000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":5,"title":["Needs of amyloidosis patients and their care providers: design &amp; first results of the\u00a0 AMY-NEEDS research and care program"],"prefix":"10.1186","volume":"19","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-8540-7122","authenticated-orcid":false,"given":"Sandra Michaela","family":"Ihne-Schubert","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Teresa","family":"Radovic","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Saskia","family":"Fries","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Stefan","family":"Frantz","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hermann","family":"Einsele","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Stefan","family":"St\u00f6rk","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Silke","family":"Neuderth","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2024,2,10]]},"reference":[{"issue":"117","key":"3052_CR1","first-page":"159","volume":"2020","author":"S Ihne","year":"2020","unstructured":"Ihne S, Morbach C, Sommer C, Geier A, Knop S, St\u00f6rk S. Amyloidosis\u2014the diagnosis and treatment of an underdiagnosed disease. Dtsch Arztebl Int. 2020;2020(117):159\u201366.","journal-title":"Dtsch Arztebl Int"},{"issue":"10","key":"3052_CR2","doi-asserted-by":"publisher","first-page":"920","DOI":"10.1007\/s12325-015-0250-0","volume":"32","author":"I Lousada","year":"2015","unstructured":"Lousada I, Comenzo RL, Landau H, Guthrie S, Merlini G. Light chain amyloidosis: patient experience survey from the amyloidosis research consortium. Adv Ther. 2015;32(10):920\u20138.","journal-title":"Adv Ther"},{"key":"3052_CR3","doi-asserted-by":"crossref","unstructured":"McCausland KL, White MK, Guthrie SD, Quock T, Finkel M, Lousada I, et al. Light chain (AL) amyloidosis: the journey to diagnosis. 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Methodische Aspekte der Durchf\u00fchrung von Fokusgruppen in der Gesundheitsforschung: Welche Anforderungen ergeben sich aufgrund der besonderen Zielgruppen und Fragestellungen? GESIS Papers. 2015."},{"key":"3052_CR9","doi-asserted-by":"crossref","unstructured":"Schulz M. Quick and easy!? Fokusgruppen in der angewandten Sozialwissenschaft. In Schulz, M.; Mack, B. & Renn, O. (Eds.), Fokusgruppen in der empirischen Sozialwissenschaft. VS Verlag f\u00fcr Sozialwissenschaften, Springer Fachmedien Wiesbaden. 2012.","DOI":"10.1007\/978-3-531-19397-7"},{"key":"3052_CR10","doi-asserted-by":"publisher","first-page":"195","DOI":"10.1007\/978-3-531-19397-7_10","volume-title":"Fokusgruppen in der empirischen Sozialwissenschaft - Von der Konzeption bis zur Auswertung","author":"M Ruddat","year":"2012","unstructured":"Ruddat M. Auswertung von Fokusgruppen mittels Zusammenfassung zentraler Diskussionsaspekte. In: Schulz M, Mack B, Renn O, editors. 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JMIR Cardio. 2018;2(1): e11.","journal-title":"JMIR Cardio"}],"container-title":["Orphanet Journal of Rare Diseases"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s13023-024-03052-w.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1186\/s13023-024-03052-w\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s13023-024-03052-w.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,2,10]],"date-time":"2024-02-10T13:04:07Z","timestamp":1707570247000},"score":1,"resource":{"primary":{"URL":"https:\/\/ojrd.biomedcentral.com\/articles\/10.1186\/s13023-024-03052-w"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,2,10]]},"references-count":24,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2024,12]]}},"alternative-id":["3052"],"URL":"https:\/\/doi.org\/10.1186\/s13023-024-03052-w","relation":{},"ISSN":["1750-1172"],"issn-type":[{"value":"1750-1172","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,2,10]]},"assertion":[{"value":"24 June 2021","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"29 January 2024","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"10 February 2024","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"The AmyKoS cohort and <sub>A<\/sub>MY-NEED<sub>S<\/sub> study protocol and procedures received positive votes from the Ethics Committee of the Medical Faculty of the University W\u00fcrzburg (AmyKoS: vote 48\/18; <sub>A<\/sub>MY-NEED<sub>S<\/sub>: vote 37\/19)","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval"}},{"value":"All participants provide written informed consent prior to any study examination.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent to participate"}},{"value":"Not applicable.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"SMI-S received financial reimbursement for consulting, advisory board activities, speaker honoraries and\/or travel support to attend scientific meetings by Akcea Therapeutics, Alnylam, Pfizer, Janssen-Cilag, and Takeda, and further research funding from Pfizer and Akcea Therapeutics. An internship was supported by ONLUS. She was fellow of the local Clinician Scientist program of the IZKF W\u00fcrzburg. StF received consultancy and lecture fees as well as travel expenses from AMGEN Europe, AstraZeneca, Bayer Vital, Boehringer Ingelheim, Bristol-Meyers Squibb GmbH, Daiichi Sankyo, MSD, Novartis, Pfizer, Sanofi, Servier, Vifor. StS is supported by the CHFC W\u00fcrzburg, and by the German Federal Ministry of Education and Research (BMBF). He has received consultancy and lecture fees as well as reimbursement of travel costs from AstraZeneca, Bayer, Boehringer Ingelheim, Novartis, Pfizer, and Servier. The other authors declare that they have no competing interests.","order":5,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"58"}}