{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,9]],"date-time":"2026-04-09T10:01:38Z","timestamp":1775728898500,"version":"3.50.1"},"reference-count":37,"publisher":"Springer Science and Business Media LLC","issue":"4","license":[{"start":{"date-parts":[[2026,2,20]],"date-time":"2026-02-20T00:00:00Z","timestamp":1771545600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0"},{"start":{"date-parts":[[2026,2,20]],"date-time":"2026-02-20T00:00:00Z","timestamp":1771545600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0"}],"funder":[{"DOI":"10.13039\/100004337","name":"Roche","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100004337","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100004047","name":"Karolinska Institute","doi-asserted-by":"crossref","id":[{"id":"10.13039\/501100004047","id-type":"DOI","asserted-by":"crossref"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Adv Ther"],"published-print":{"date-parts":[[2026,4]]},"DOI":"10.1007\/s12325-026-03503-9","type":"journal-article","created":{"date-parts":[[2026,2,20]],"date-time":"2026-02-20T09:37:49Z","timestamp":1771580269000},"page":"1741-1755","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Medical Absenteeism and Premature Death in Spinal Muscular Atrophy in Sweden: A Population-Based Matched Register Study of People of Working Age"],"prefix":"10.1007","volume":"43","author":[{"given":"Thomas","family":"Sejersen","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Anne-Berit","family":"Ekstr\u00f6m","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Anna-Karin","family":"Kroksmark","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Nahila","family":"Justo","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Michael L.","family":"Ganz","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Charlotte","family":"Pettersson","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sophie","family":"Graham","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Karl","family":"Gertow","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sreeram","family":"Ramagopalan","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Alex","family":"Simpson","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"297","published-online":{"date-parts":[[2026,2,20]]},"reference":[{"key":"3503_CR1","unstructured":"Burr P, Reddivari AKR. Spinal Muscle Atrophy. StatPearls. Treasure Island (FL): StatPearls Publishing Copyright \u00a9 2024, StatPearls Publishing LLC.; 2024."},{"issue":"3","key":"3503_CR2","doi-asserted-by":"publisher","first-page":"743","DOI":"10.1016\/j.pcl.2015.03.010","volume":"62","author":"BT Darras","year":"2015","unstructured":"Darras BT. Spinal muscular atrophies. Pediatr Clin North Am. 2015;62(3):743\u201366. https:\/\/doi.org\/10.1016\/j.pcl.2015.03.010.","journal-title":"Pediatr Clin North Am"},{"issue":"4","key":"3503_CR3","doi-asserted-by":"publisher","first-page":"831","DOI":"10.1016\/j.ncl.2015.07.004","volume":"33","author":"SJ Kolb","year":"2015","unstructured":"Kolb SJ, Kissel JT. Spinal Muscular Atrophy. Neurol Clin. 2015;33(4):831\u201346. https:\/\/doi.org\/10.1016\/j.ncl.2015.07.004.","journal-title":"Neurol Clin"},{"issue":"9630","key":"3503_CR4","doi-asserted-by":"publisher","first-page":"2120","DOI":"10.1016\/S0140-6736(08)60921-6","volume":"371","author":"MR Lunn","year":"2008","unstructured":"Lunn MR, Wang CH. Spinal muscular atrophy. Lancet. 2008;371(9630):2120\u201333. https:\/\/doi.org\/10.1016\/S0140-6736(08)60921-6.","journal-title":"Lancet"},{"key":"3503_CR5","doi-asserted-by":"publisher","first-page":"S64","DOI":"10.1016\/S1090-3798(15)30213-0","volume":"19","author":"C Jones","year":"2015","unstructured":"Jones C, Oskoui M, Zielinski D, Vinikoor L, Farwell W. PP09.1 \u2013 2352: Systematic review of incidence and prevalence of spinal muscular atrophy (SMA). Eur J Paediatr Neurol. 2015;19:S64\u20135. https:\/\/doi.org\/10.1016\/S1090-3798(15)30213-0.","journal-title":"Eur J Paediatr Neurol"},{"issue":"12","key":"3503_CR6","doi-asserted-by":"publisher","first-page":"1015","DOI":"10.1038\/sj.ejhg.5201288","volume":"12","author":"S Ogino","year":"2004","unstructured":"Ogino S, Wilson RB, Gold B. New insights on the evolution of the SMN1 and SMN2 region: simulation and meta-analysis for allele and haplotype frequency calculations. Eur J Hum Genet. 2004;12(12):1015\u201323. https:\/\/doi.org\/10.1038\/sj.ejhg.5201288.","journal-title":"Eur J Hum Genet"},{"issue":"8","key":"3503_CR7","doi-asserted-by":"publisher","first-page":"1027","DOI":"10.1177\/0883073807305788","volume":"22","author":"CH Wang","year":"2007","unstructured":"Wang CH, Finkel RS, Bertini ES, Schroth M, Simonds A, Wong B, et al. Consensus statement for standard of care in spinal muscular atrophy. J Child Neurol. 2007;22(8):1027\u201349. https:\/\/doi.org\/10.1177\/0883073807305788.","journal-title":"J Child Neurol"},{"issue":"3","key":"3503_CR8","doi-asserted-by":"publisher","first-page":"197","DOI":"10.1016\/j.nmd.2017.11.004","volume":"28","author":"RS Finkel","year":"2018","unstructured":"Finkel RS, Mercuri E, Meyer OH, Simonds AK, Schroth MK, Graham RJ, et al. Diagnosis and management of spinal muscular atrophy: part 2: pulmonary and acute care; medications, supplements and immunizations; other organ systems; and ethics. Neuromuscul Disord. 2018;28(3):197\u2013207. https:\/\/doi.org\/10.1016\/j.nmd.2017.11.004.","journal-title":"Neuromuscul Disord"},{"key":"3503_CR9","unstructured":"European Medicines Agency. Spinraza. INN-nusinersen Product Information. 2024. https:\/\/www.ema.europa.eu\/en\/documents\/product-information\/spinraza-epar-product-information_en.pdf. Accessed Mar 2025."},{"key":"3503_CR10","doi-asserted-by":"publisher","first-page":"1865","DOI":"10.2147\/DDDT.S214174","volume":"16","author":"HT Hjartarson","year":"2022","unstructured":"Hjartarson HT, Nathorst-Boos K, Sejersen T. Disease modifying therapies for the management of children with spinal muscular atrophy (5q SMA): an update on the emerging evidence. Drug Des Devel Ther. 2022;16:1865\u201383. https:\/\/doi.org\/10.2147\/DDDT.S214174.","journal-title":"Drug Des Devel Ther"},{"issue":"1","key":"3503_CR11","doi-asserted-by":"publisher","DOI":"10.1186\/s13023-021-01695-7","volume":"16","author":"T Dangouloff","year":"2021","unstructured":"Dangouloff T, Botty C, Beaudart C, Servais L, Hiligsmann M. Systematic literature review of the economic burden of spinal muscular atrophy and economic evaluations of treatments. Orphanet J Rare Dis. 2021;16(1):47. https:\/\/doi.org\/10.1186\/s13023-021-01695-7.","journal-title":"Orphanet J Rare Dis"},{"issue":"4","key":"3503_CR12","doi-asserted-by":"publisher","first-page":"501","DOI":"10.1007\/s40258-020-00624-2","volume":"19","author":"E Landfeldt","year":"2021","unstructured":"Landfeldt E, Pechmann A, McMillan HJ, Lochm\u00fcller H, Sejersen T. Costs of illness of spinal muscular atrophy: a systematic review. Appl Health Econ Health Policy. 2021;19(4):501\u201320. https:\/\/doi.org\/10.1007\/s40258-020-00624-2.","journal-title":"Appl Health Econ Health Policy"},{"issue":"1","key":"3503_CR13","doi-asserted-by":"publisher","first-page":"11","DOI":"10.1007\/s40273-021-01105-7","volume":"40","author":"N Paracha","year":"2022","unstructured":"Paracha N, Hudson P, Mitchell S, Sutherland CS. Systematic literature review to assess the cost and resource use associated with spinal muscular atrophy management. Pharmacoeconomics. 2022;40(1):11\u201338. https:\/\/doi.org\/10.1007\/s40273-021-01105-7.","journal-title":"Pharmacoeconomics"},{"issue":"1","key":"3503_CR14","doi-asserted-by":"publisher","first-page":"e1","DOI":"10.1212\/wnl.0000000000009715","volume":"95","author":"GM Chambers","year":"2020","unstructured":"Chambers GM, Settumba SN, Carey KA, Cairns A, Menezes MP, Ryan M, et al. Prenusinersen economic and health-related quality of life burden of spinal muscular atrophy. Neurology. 2020;95(1):e1\u201310. https:\/\/doi.org\/10.1212\/wnl.0000000000009715.","journal-title":"Neurology"},{"issue":"1","key":"3503_CR15","doi-asserted-by":"publisher","DOI":"10.1186\/s13023-016-0424-0","volume":"11","author":"C Klug","year":"2016","unstructured":"Klug C, Schreiber-Katz O, Thiele S, Schorling E, Zowe J, Reilich P, et al. Disease burden of spinal muscular atrophy in Germany. Orphanet J Rare Dis. 2016;11(1):58. https:\/\/doi.org\/10.1186\/s13023-016-0424-0.","journal-title":"Orphanet J Rare Dis"},{"issue":"1","key":"3503_CR16","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1177\/2284240319867662","volume":"6","author":"A Marcellusi","year":"2019","unstructured":"Marcellusi A, Bini C, Casiraghi J, D\u2019Ambrosio F, Rotundo MA, Pallara A, et al. Cost of illness of spinal muscular atrophy (SMA) in Italy. Glob Region Health Technol Assess. 2019;6(1):1\u201312. https:\/\/doi.org\/10.1177\/2284240319867662.","journal-title":"Glob Region Health Technol Assess"},{"issue":"6","key":"3503_CR17","doi-asserted-by":"publisher","first-page":"845","DOI":"10.1007\/s40273-019-00769-6","volume":"37","author":"S Zuluaga-Sanchez","year":"2019","unstructured":"Zuluaga-Sanchez S, Teynor M, Knight C, Thompson R, Lundqvist T, Ekelund M, et al. Cost effectiveness of nusinersen in the treatment of patients with infantile-onset and later-onset spinal muscular atrophy in Sweden. Pharmacoeconomics. 2019;37(6):845\u201365. https:\/\/doi.org\/10.1007\/s40273-019-00769-6.","journal-title":"Pharmacoeconomics"},{"key":"3503_CR18","unstructured":"Swedish National Board of Health and Welfare (Socialstyrelsen). Statistics and data: Register. The patient register. 2018. https:\/\/www.socialstyrelsen.se\/statistik-och-data\/register\/patientregistret\/. Accessed Mar 2025."},{"key":"3503_CR19","unstructured":"Swedish National Board of Health and Welfare (Socialstyrelsen). Statistics and data: Register. The cause of death register. 2018. https:\/\/www.socialstyrelsen.se\/statistik-och-data\/register\/dodsorsaksregistret\/. Accessed Mar 2025."},{"key":"3503_CR20","unstructured":"Statistics Sweden (Statistiska centralbyr\u00e5n). The Statistics Authority Micro-data for the Register of the Total Population (RTB). 2020. https:\/\/www.scb.se\/vara-tjanster\/bestall-data-och-statistik\/register\/registret-over-totalbefolkningen-rtb\/. Accessed Mar 2025."},{"key":"3503_CR21","unstructured":"Statistics Sweden (Statistiska centralbyr\u00e5n). The Statistics Authority Longitudinal Integration Database for Health Insurance and Labour Market Studies (LISA). 2024. https:\/\/www.scb.se\/vara-tjanster\/bestall-data-och-statistik\/register\/lisa\/. Accessed Mar 2025."},{"key":"3503_CR22","unstructured":"Swedish Neuro Registries. Neuromuscular Disorders NMiS. 2024. https:\/\/neuroreg.se\/en\/. Mar 2025."},{"key":"3503_CR23","unstructured":"Swedish National Board of Health and Welfare (Socialstyrelsen). Statistics and data. Classifications and codes. The ICD-10 classification. 2018. https:\/\/www.socialstyrelsen.se\/statistik-och-data\/klassifikationer-och-koder\/icd-10\/. Accessed Mar 2025."},{"key":"3503_CR24","unstructured":"Statistics Sweden (Statistiska centralbyr\u00e5n). Labour Force Surveys (LFS). 2024. https:\/\/www.scb.se\/en\/finding-statistics\/statistics-by-subject-area\/labour-market\/labour-force-surveys\/labour-force-surveys-lfs\/. Accessed Mar 2025."},{"key":"3503_CR25","unstructured":"The Swedish Tax Agency (Skatteverket). Employer contributions (Arbetsgivaravgifter). 2024. https:\/\/www.skatteverket.se\/foretagochorganisationer\/arbetsgivare\/arbetsgivaravgifterochskatteavdrag\/arbetsgivaravgifter.4.233f91f71260075abe8800020817.html. Accessed Mar 2025."},{"key":"3503_CR26","unstructured":"Statistics Sweden (Statistiska centralbyr\u00e5n). The Statistics Authority Quick Facts: Average salaries in Sweden. 2024. https:\/\/www.scb.se\/hitta-statistik\/sverige-i-siffror\/utbildning-jobb-och-pengar\/medelloner-i-sverige. Accessed Mar 2025."},{"key":"3503_CR27","unstructured":"Social Insurance Agency (F\u00f6rs\u00e4kringskassan). Social Insurance in Figures 2021. 2024. https:\/\/www.forsakringskassan.se\/wps\/wcm\/connect\/11bc72d6-4bbb-4893-8a3b-c9e9eae568f8\/social-insurance-in-figures-2021.pdf?MOD=AJPERES&CVID=. Accessed Mar 2025."},{"key":"3503_CR28","unstructured":"Swedish National Board of Health and Welfare (Socialstyrelsen). Statistical database for causes of death. 2022. https:\/\/www.socialstyrelsen.se\/statistik-och-data\/register\/patientregistret\/. Accessed Mar 2025."},{"key":"3503_CR29","unstructured":"Official Statistics of Sweden. Statistical Database Total earned income for persons registered in the national population register during the whole year by region, level of educational, sex and age. 2020. https:\/\/www.statistikdatabasen.scb.se\/pxweb\/en\/ssd\/START__HE__HE0110__HE0110A\/SamForvInk1c\/. Accessed Mar 2025."},{"key":"3503_CR30","unstructured":"Official Statistics of Sweden. Statistical Database Population 16+ years (RAMS) by region, employment, age and sex. 2018. https:\/\/www.statistikdatabasen.scb.se\/pxweb\/sv\/ssd\/START__AM__AM0207__AM0207H\/BefSyssAldKonK\/. Accessed Mar 2025."},{"key":"3503_CR31","unstructured":"Sveriges Riksbank. Annual average exchange rates (aggregate). 2021. https:\/\/www.riksbank.se\/en-gb\/statistics\/search-interest--exchange-rates\/annual-average-exchange-rates\/. Accessed Mar 2025."},{"key":"3503_CR32","doi-asserted-by":"publisher","DOI":"10.1186\/1471-2288-11-83","volume":"11","author":"SK Thygesen","year":"2011","unstructured":"Thygesen SK, Christiansen CF, Christensen S, Lash TL, S\u00f8rensen HT. The predictive value of ICD-10 diagnostic coding used to assess Charlson comorbidity index conditions in the population-based Danish National Registry of Patients. BMC Med Res Methodol. 2011;11:83. https:\/\/doi.org\/10.1186\/1471-2288-11-83.","journal-title":"BMC Med Res Methodol"},{"issue":"6","key":"3503_CR33","doi-asserted-by":"publisher","first-page":"676","DOI":"10.1093\/aje\/kwq433","volume":"173","author":"H Quan","year":"2011","unstructured":"Quan H, Li B, Couris CM, Fushimi K, Graham P, Hider P, et al. Updating and validating the Charlson comorbidity index and score for risk adjustment in hospital discharge abstracts using data from 6 countries. Am J Epidemiol. 2011;173(6):676\u201382. https:\/\/doi.org\/10.1093\/aje\/kwq433.","journal-title":"Am J Epidemiol"},{"issue":"sup1","key":"3503_CR34","doi-asserted-by":"publisher","first-page":"51","DOI":"10.1080\/13696998.2021.2013676","volume":"24","author":"G Chen","year":"2021","unstructured":"Chen G, Sharif B, Gerber B, Farris MS, Cowling T, Cabalteja C, et al. Epidemiology, healthcare resource utilization and healthcare costs for spinal muscular atrophy in Alberta. Canada J Med Econ. 2021;24(sup1):51\u20139. https:\/\/doi.org\/10.1080\/13696998.2021.2013676.","journal-title":"Canada J Med Econ"},{"issue":"1","key":"3503_CR35","doi-asserted-by":"publisher","DOI":"10.1186\/s13023-019-1287-y","volume":"15","author":"J Darb\u00e0","year":"2020","unstructured":"Darb\u00e0 J. Management and current status of spinal muscular atrophy: a retrospective multicentre claims database analysis. Orphanet J Rare Dis. 2020;15(1):8. https:\/\/doi.org\/10.1186\/s13023-019-1287-y.","journal-title":"Orphanet J Rare Dis"},{"key":"3503_CR36","unstructured":"EUROSTAT. Consumer Price Index Values. 2024. https:\/\/ec.europa.eu\/eurostat\/databrowser\/view\/prc_ipc_g20\/default\/table?lang=en. Accessed Mar 2025."},{"issue":"1","key":"3503_CR37","doi-asserted-by":"publisher","first-page":"18","DOI":"10.1111\/jpc.14226","volume":"55","author":"S Vukovic","year":"2019","unstructured":"Vukovic S, McAdam L, Zlotnik-Shaul R, Amin R. Putting our best foot forward: clinical, treatment-based and ethical considerations of nusinersen therapy in Canada for spinal muscular atrophy. J Paediatr Child Health. 2019;55(1):18\u201324. https:\/\/doi.org\/10.1111\/jpc.14226.","journal-title":"J Paediatr Child Health"}],"container-title":["Advances in Therapy"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s12325-026-03503-9.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1007\/s12325-026-03503-9","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s12325-026-03503-9.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,4,9]],"date-time":"2026-04-09T09:14:18Z","timestamp":1775726058000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1007\/s12325-026-03503-9"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,2,20]]},"references-count":37,"journal-issue":{"issue":"4","published-print":{"date-parts":[[2026,4]]}},"alternative-id":["3503"],"URL":"https:\/\/doi.org\/10.1007\/s12325-026-03503-9","relation":{},"ISSN":["0741-238X","1865-8652"],"issn-type":[{"value":"0741-238X","type":"print"},{"value":"1865-8652","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,2,20]]},"assertion":[{"value":"27 May 2025","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"16 January 2026","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"20 February 2026","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"Thomas Sejersen is a recipient of honoraria received for lectures or consultancy from Biogen, Novartis, PTC Therapeutics, Sarepta Therapeutics, Roche, and Santhera. Anne-Berit Ekstr\u00f6m is a recipient of honoraria received for lectures or consultancy from Biogen, Novartis, PTC Therapeutics, Sarepta Therapeutics, Pfizer, Roche, and Italfarmaco. Anna-Karin Kroksmark has acted as a clinical evaluator and consultant to Biogen. Nahila Justo, Michael L. Ganz, Charlotte Pettersson, and Sophie Graham are employed by Evidera, which provides consulting and other research services to pharmaceutical, medical device, and related organisations. In their salaried positions, they work with a variety of companies and organisations and are precluded from receiving payment or honoraria directly from these organisations for services rendered. Karl Gertow is employed by Roche AB, Sweden. Sreeram Ramagopalan and Alex Simpson were employed by F. Hoffmann-La Roche Ltd. at the time the research was conducted.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Conflict of Interest"}},{"value":"The study was approved by the Swedish Ethical Review Authority DNR:2020\u201304656. This article is based on previously conducted studies and does not contain any new studies with human participants or animals performed by any of the authors.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethical Approval"}}]}}