{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,31]],"date-time":"2026-08-31T20:07:08Z","timestamp":1788206828976,"version":"build-2803163510"},"reference-count":45,"publisher":"Wiley","issue":"6","license":[{"start":{"date-parts":[[2025,6,16]],"date-time":"2025-06-16T00:00:00Z","timestamp":1750032000000},"content-version":"vor","delay-in-days":15,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Euro J of Neurology"],"published-print":{"date-parts":[[2025,6]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Adult\u2010onset myotonic dystrophy type 1 (DM1) is characterised by diagnostic delay due to milder symptomatology than the congenital and juvenile forms. The multiorgan symptoms in the multiorgan nature of DM1 have negative biopsychosocial consequences. The aim was to apply national health registers to provide updated knowledge on the use and costs of healthcare services and labour market affiliation of persons with adult\u2010onset DM1 in Denmark.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Analyses were based on a population of 949 adult persons with DM1 and 9427 controls. Median age at diagnosis was 43\u2009years. Each person with DM1 was matched with ten reference individuals from the general Danish population without DM1. Data were retrieved from several databases: Statistics Denmark, the Danish National Patient Register, Danish National Health Service Register, the Danish National Prescription Registry and the Income register and the DREAM database.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>During the 20\u2010year following diagnosis, persons with DM1 had 2.5 times more inpatient contacts, 2 times more outpatient contacts and 29.1 times more hours of home care than their controls. Persons with DM1 had a lower educational level, a higher risk of early disability pension (HR: 11.6, CI: 9.92\u201313.6), 68.2\u2009weeks more unemployment and 29.2\u2009weeks more long\u2010term sick leave and EUR 11,700\u201323,500 a lower income per year of the study. For all results, the difference between persons with DM1 and their controls was more expressed in males.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>The course of disease in adult\u2010onset DM1\u2014normally considered to be mild\u2014has a significant impact on health and living conditions.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/ene.70211","type":"journal-article","created":{"date-parts":[[2025,6,16]],"date-time":"2025-06-16T09:31:18Z","timestamp":1750066278000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":4,"title":["Societal Costs, Healthcare Utilisation and Labour Market Affiliation of Persons With Adult\u2010Onset Myotonic Dystrophy Type 1 (\n                    <scp>DM1<\/scp>\n                    )\u2014A Register\u2010Based Study\n                    <scp>II<\/scp>"],"prefix":"10.1111","volume":"32","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-1378-2449","authenticated-orcid":false,"given":"Charlotte","family":"Handberg","sequence":"first","affiliation":[{"name":"National Rehabilitation Centre for Neuromuscular Diseases  Aarhus Denmark"},{"name":"Department of Public Health, Faculty of Health Aarhus University  Aarhus Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4058-056X","authenticated-orcid":false,"given":"Jan H\u00e5kon","family":"Rudolfsen","sequence":"additional","affiliation":[{"name":"EY  Copenhagen Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9082-2694","authenticated-orcid":false,"given":"Henning","family":"Andersen","sequence":"additional","affiliation":[{"name":"Department of Clinical Medicine \u2010 The Department of Neurology Aarhus University Hospital  Aarhus Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6144-8544","authenticated-orcid":false,"given":"John","family":"Vissing","sequence":"additional","affiliation":[{"name":"Copenhagen Neuromuscular Center Copenhagen University Hospital  Copenhagen Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0009-8897-1461","authenticated-orcid":false,"given":"Charlotte Dahl","family":"Rossau","sequence":"additional","affiliation":[{"name":"Department of Anesthesiology and Intensive Care Aarhus University Hospital  Aarhus Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3581-7438","authenticated-orcid":false,"given":"Pia","family":"Dreyer","sequence":"additional","affiliation":[{"name":"Department of Public Health, Faculty of Health Aarhus University  Aarhus Denmark"},{"name":"Department of Anesthesiology and Intensive Care Aarhus University Hospital  Aarhus Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6847-1736","authenticated-orcid":false,"given":"Jens","family":"Olsen","sequence":"additional","affiliation":[{"name":"EY  Copenhagen Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Simone D.","family":"Bengtsson","sequence":"additional","affiliation":[{"name":"EY  Copenhagen Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Heidi","family":"Aagaard","sequence":"additional","affiliation":[{"name":"National Rehabilitation Centre for Neuromuscular Diseases  Aarhus Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5294-2046","authenticated-orcid":false,"given":"Ulla","family":"Werlauff","sequence":"additional","affiliation":[{"name":"National Rehabilitation Centre for Neuromuscular Diseases  Aarhus Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2025,6,16]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.neurol.2016.08.003"},{"key":"e_1_2_9_3_1","doi-asserted-by":"publisher","DOI":"10.1159\/000444018"},{"key":"e_1_2_9_4_1","doi-asserted-by":"publisher","DOI":"10.3390\/ijerph18041794"},{"key":"e_1_2_9_5_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1474-4422(12)70204-1"},{"issue":"9","key":"e_1_2_9_6_1","first-page":"1","article-title":"Living With Adult\u2010Onset Myotonic Dystrophy Type 1: A Scoping Review","volume":"47","author":"Allergodt K.","year":"2024","journal-title":"Disability and Rehabilitation"},{"key":"e_1_2_9_7_1","volume-title":"Myotonic Dystrophy","author":"Harper P. 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