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Recent studies showed differences in the perception of physician- versus patient-reported symptom burden. However, studies directly comparing patient- and physician-reported ratings are lacking. Here, a retrospective analysis on symptom burden of 3979 MPN patients of the Bioregistry of the German Study Group for MPN was conducted to intra-individually compare physician and patient reports collected at the same time. Cohen\u2019s kappa was calculated to assess the degree of agreement between patient and physician reports. Factors influencing baseline symptom severity were identified using linear regression and adjusted Cox models were calculated to investigate the effect of symptom burden on survival. MPN patients had a high symptom burden, which neither decreased over time nor upon cytoreductive therapy. All symptoms were more frequently reported by patients compared to physicians. Agreement remained low and only slightly improved when considering a higher threshold for patient symptom severity. Patients with severe symptom burden had inferior survival compared to patients with less severe symptoms. Assessment of symptom burden in MPN is therefore insufficient and patient-reported outcome tools need to be implemented into clinical routine.<\/jats:p>","DOI":"10.1038\/s41375-025-02524-7","type":"journal-article","created":{"date-parts":[[2025,2,25]],"date-time":"2025-02-25T12:50:26Z","timestamp":1740487826000},"page":"864-875","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":17,"title":["Comparison of recognition of symptom burden in MPN between patient- and physician-reported assessment \u2013 an intraindividual analysis by the German Study Group for MPN (GSG-MPN)"],"prefix":"10.1038","volume":"39","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-7740-4076","authenticated-orcid":false,"given":"Kirsi","family":"Manz","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2438-1955","authenticated-orcid":false,"given":"Florian H.","family":"Heidel","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1011-8171","authenticated-orcid":false,"given":"Steffen","family":"Koschmieder","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rudolf","family":"Schlag","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"J\u00f6rg","family":"Lipke","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2157-476X","authenticated-orcid":false,"given":"Frank","family":"Stegelmann","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Martin","family":"Griesshammer","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Martine","family":"Klausmann","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Carl","family":"Crodel","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0626-0834","authenticated-orcid":false,"given":"Andreas","family":"Hochhaus","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Holger","family":"Schulz","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joachim R.","family":"G\u00f6thert","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5009-2239","authenticated-orcid":false,"given":"Haifa","family":"Al-Ali","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Heiko","family":"Becker","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7718-6507","authenticated-orcid":false,"given":"Andreas","family":"Reiter","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6758-6104","authenticated-orcid":false,"given":"Gernot","family":"Beutel","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kim","family":"Kricheldorf","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tim H.","family":"Br\u00fcmmendorf","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Wolfgang","family":"Hoffmann","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2261-9862","authenticated-orcid":false,"given":"Konstanze","family":"D\u00f6hner","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Susanne","family":"Isfort","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"name":"On behalf of the German Study Group for Myeloproliferative Neoplasms (GSG-MPN)","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2025,2,25]]},"reference":[{"key":"2524_CR1","doi-asserted-by":"crossref","first-page":"854","DOI":"10.3390\/cells8080854","volume":"8","author":"F Perner","year":"2019","unstructured":"Perner F, Perner C, Ernst T, Heidel FH. 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Cancer Med. 2020;9:4512\u201326.","journal-title":"Cancer Med"},{"key":"2524_CR10","doi-asserted-by":"crossref","first-page":"3565","DOI":"10.3390\/cancers12123565","volume":"12","author":"N Brochmann","year":"2020","unstructured":"Brochmann N, Flachs EM, Christensen AI, Bak M, Andersen CL, Juel K, et al. Health-Related Quality of Life in Patients with Philadelphia-Negative Myeloproliferative Neoplasms: A Nationwide Population-Based Survey in Denmark. Cancers. 2020;12:3565.","journal-title":"Cancers"},{"key":"2524_CR11","doi-asserted-by":"crossref","DOI":"10.1080\/16078454.2023.2280731","volume":"28","author":"N Cherdchoo","year":"2023","unstructured":"Cherdchoo N, Polprasert C, Rojnuckarin P, Kongkiatkamon S. Clinical characteristics and symptom burden of Thai myeloproliferative neoplasm patients. 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Hemasphere. 2024;8:e69.","journal-title":"Hemasphere"}],"container-title":["Leukemia"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.nature.com\/articles\/s41375-025-02524-7.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/www.nature.com\/articles\/s41375-025-02524-7","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/www.nature.com\/articles\/s41375-025-02524-7.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,4,7]],"date-time":"2025-04-07T13:47:58Z","timestamp":1744033678000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.nature.com\/articles\/s41375-025-02524-7"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,2,25]]},"references-count":36,"journal-issue":{"issue":"4","published-print":{"date-parts":[[2025,4]]}},"alternative-id":["2524"],"URL":"https:\/\/doi.org\/10.1038\/s41375-025-02524-7","relation":{},"ISSN":["0887-6924","1476-5551"],"issn-type":[{"value":"0887-6924","type":"print"},{"value":"1476-5551","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,2,25]]},"assertion":[{"value":"26 June 2024","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"21 November 2024","order":2,"name":"revised","label":"Revised","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"27 January 2025","order":3,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"25 February 2025","order":4,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"KM reports no conflicts of interest. FHH reports research funding from Novartis, BMS\/Celgene, CTI and Consultancy for Novartis, BMS\/Celgene, AOP Pharma, Janssen, GSK, Abbvie, Kartos, Sierra Oncology. SK reports research funding from Novartis, Bristol-Myers Squibb, AOP Pharma, Janssen, Geron, Imago Biosciences; advisory board honoraria and\/or consulting fees from Pfizer, Incyte, Ariad, Novartis, AOP Pharma, BMS, Celgene, Geron, Janssen, CTI, Roche, Baxalta, Sanofi, Sierra Oncology, GSK, Abbvie; patent for BET inhibitor at RWTH Aachen University; honoraria from Novartis, BMS, Celgene, Geron, Janssen, Pfizer, Incyte, Ariad, Shire, Roche, AOP Pharma, GSK, Abbvie, iOMEDICO, MPN Hub; and other financial support (e.g. travel support) from Alexion, Novartis, BMS, Incyte, Ariad, AOP Pharma, Baxalta, CTI, Pfizer, Sanofi, Celgene, Shire, Janssen, Geron, Abbvie, Kartos, Sierra Oncology, Imago Bioscience, GSK, Abbvie, MSD, iOMEDICO. RS reports no conflict of interest. JL reports no conflict of interest. FS reports advisory board and\/or speaker honoraria from Abbvie, BMS\/Celgene, GSK, Incyte, MorphoSys, Novartis, and Pfizer. MG reports consultancy for AOP Orphan, Novartis, BMS, AbbVie, Pfizer, Roche, Janssen, Gilead, AstraZeneca, Sierra, Lilly, GSK and honoraria from AOP Orphan, Novartis, BMS, AbbVie, Pfizer, Roche, Janssen, Gilead, AstraZeneca, Sierra, Lilly, GSK. MK reports no conflicts of interest. CC reports advisory board honoraria from GSK, BMS, BeiGene and AstraZeneca, honoraria from GSK, Novartis, BMS, Synlab, AOP Orphan and AstraZeneca; and other financial support (e.g. travel support) from Novartis. AH reports research support from Novartis, BMS, Incyte, Pfizer, Terns, Enliven; honoraria from Novartis and Incyte; Editor-in-Chief, Leukemia. HS reports no conflicts of interest. JRG reports honoraria from Bristol-Myers Squibb, Pfizer, Novartis, GlaxoSmithKline, Blueprint Medicines, AOP Orphan Pharmaceuticals, pharma&, Incyte; advisory board participation: Imago BioSciences, Proteros biostructures, CTI Biopharma, Bristol-Myers Squibb, Pfizer, Novartis, AbbVie, GlaxoSmithKline, Blueprint Medicines, AOP Orphan Pharmaceuticals, Incyte and travel support from Bristol-Myers Squibb, Novartis, AOP Orphan Pharmaceuticals, Incyte. HA reports consultancy for BMS, Novartis, Abbvie, AOP, GSK, Otsuka, and has received honoraria from BMS, Novartis, Abbvie, AOP, GSK, Blueprint, Stemline, MSD, Otsuka and membership on board of directors\/ advisory committees from BMS, Novartis, Abbvie, AOP, and GSK, and other financial support (travel grants) from Alexion and Abbvie. HB reports honoraria from Abbvie, BMS, GSK, Lilly, MSD, Novartis, Pierre Fabre Pharma, and Servier. AR reports advisory boards and honoraria from AOP, Blueprint, Cogent, Novartis and GSK. GB reports no conflicts of interest. KK reports no conflicts of interest. THB has been a consultant for Gilead, Janssen, Merck, Novartis, and Pfizer, and has received research support from RepeatDx, Novartis and Pfizer. WH reports honoraria from Pfizer. KD reports financial relationsships or affiliations with Novartis, AOP Health, Celgene\/BMS, JAZZ, Astellas, Agios, Abbvie, GSK, and MSD. SI reports advisory board honoraria from GSK, Silence Therapeutics, Pfizer, Incyte, and Novartis, honoraria from GSK, Novartis, BMS, Pfizer, Incyte, AOP Orphan; and other financial support (e.g. travel support) from Alexion, Novartis, Pfizer, Mundipharma, Roche, Hexal and AOP Orphan.","order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}]}}