{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,31]],"date-time":"2026-08-31T20:07:09Z","timestamp":1788206829300,"version":"build-2803163510"},"reference-count":23,"publisher":"Wiley","issue":"6","license":[{"start":{"date-parts":[[2025,2,18]],"date-time":"2025-02-18T00:00:00Z","timestamp":1739836800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Muscle and Nerve"],"published-print":{"date-parts":[[2025,6]]},"abstract":"<jats:title>ABSTRACT<\/jats:title><jats:sec><jats:title>Introduction\/Aims<\/jats:title><jats:p>Healthcare utilization and costs in myotonic dystrophy (DM) are not well understood. This study describes the burden of DM and its associated costs.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>We performed a retrospective study using data from a large U.S. administrative claims database to identify commercially insured individuals with DM and compared healthcare utilization and cost with a matched cohort. Analyses were performed between the cohorts with \u2265\u20093\u2009years of insured follow\u2010up.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>We identified 1182 DM individuals with coverage at least 3\u2009year prior and 3\u2009years following an index DM diagnosis from January 1, 2009 to December 31, 2018. Compared to controls, DM individuals were 3.7 times more likely to be hospitalized (<jats:italic>p<\/jats:italic>\u2009&lt;\u20090.0001), 2.4 times more likely to visit an emergency department (<jats:italic>p<\/jats:italic>\u2009&lt;\u20090.0001), and had twice as many outpatient visits (<jats:italic>p<\/jats:italic>\u2009&lt;\u20090.0001) in the first year post\u2010diagnosis, with similar utilization at 2\u2010 and 3\u2010years post\u2010diagnosis. Annual mean costs were 3.9 times higher for health plan paid costs (<jats:italic>p<\/jats:italic>\u2009&lt;\u20090.0001) and 2.6 times higher for patient\u2010paid costs (<jats:italic>p<\/jats:italic>\u2009&lt;\u20090.0001) for DM individuals than controls in the first year post\u2010diagnosis, with similar costs at 2\u2010 and 3\u2010years post\u2010diagnosis. Factors associated with higher costs included the need for durable medical equipment, including gait aids or respiratory support devices.<\/jats:p><\/jats:sec><jats:sec><jats:title>Discussion<\/jats:title><jats:p>Individuals with DM experience significantly higher healthcare utilization and associated healthcare costs than controls of similar age, sex, race, and census region. The findings show the high clinical and economic burden of DM, highlighting the importance of improving cost\u2010effective care delivery in this population.<\/jats:p><\/jats:sec>","DOI":"10.1002\/mus.28374","type":"journal-article","created":{"date-parts":[[2025,2,19]],"date-time":"2025-02-19T07:35:48Z","timestamp":1739950548000},"page":"972-978","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":3,"title":["Myotonic Dystrophy (<scp>DM<\/scp>) Burden of Disease: A Retrospective Study of Healthcare Costs and Utilization by Individuals With <scp>DM<\/scp>"],"prefix":"10.1002","volume":"71","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-1432-5602","authenticated-orcid":false,"given":"Jennifer M.","family":"Martinez\u2010Thompson","sequence":"first","affiliation":[{"name":"Departments of Neurology Mayo Clinic  Rochester USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"W. Oliver","family":"Tobin","sequence":"additional","affiliation":[{"name":"Departments of Neurology Mayo Clinic  Rochester USA"},{"name":"Kern Center for the Science of Health Care Delivery Division of Health Care Delivery Research, Mayo Clinic  Rochester USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hayley J.","family":"Dykhoff","sequence":"additional","affiliation":[{"name":"Kern Center for the Science of Health Care Delivery Division of Health Care Delivery Research, Mayo Clinic  Rochester USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lindsey R.","family":"Sangaralingham","sequence":"additional","affiliation":[{"name":"Kern Center for the Science of Health Care Delivery Division of Health Care Delivery Research, Mayo Clinic  Rochester USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Molly K.","family":"White","sequence":"additional","affiliation":[{"name":"Myotonic Dystrophy Foundation  Oakland, CA USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Duygu","family":"Selcen","sequence":"additional","affiliation":[{"name":"Departments of Neurology Mayo Clinic  Rochester USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bijan J.","family":"Borah","sequence":"additional","affiliation":[{"name":"Kern Center for the Science of Health Care Delivery Division of Health Care Delivery Research, Mayo Clinic  Rochester USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2025,2,18]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.1093\/brain\/awp236"},{"key":"e_1_2_9_3_1","first-page":"1889","article-title":"The Dystrophic and Nondystrophic Myotonias","volume":"22","author":"Sansone V. A.","year":"2016","journal-title":"Continuum (Minneapolis, Minn)"},{"key":"e_1_2_9_4_1","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.0000000000003504"},{"issue":"303","key":"e_1_2_9_5_1","first-page":"1","article-title":"Core Clinical Phenotypes in Myotonic Dystrophies","volume":"9","author":"Wenninger S.","year":"2018","journal-title":"Frontiers in Neurology"},{"key":"e_1_2_9_6_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00415-013-6993-0"},{"key":"e_1_2_9_7_1","doi-asserted-by":"publisher","DOI":"10.1097\/00002060-199701000-00006"},{"key":"e_1_2_9_8_1","doi-asserted-by":"publisher","DOI":"10.1097\/JNN.0000000000000160"},{"key":"e_1_2_9_9_1","doi-asserted-by":"publisher","DOI":"10.1017\/cjn.2015.26"},{"key":"e_1_2_9_10_1","doi-asserted-by":"publisher","DOI":"10.1002\/mus.23942"},{"key":"e_1_2_9_11_1","doi-asserted-by":"publisher","DOI":"10.1097\/01.mlr.0000182534.19832.83"},{"key":"e_1_2_9_12_1","doi-asserted-by":"publisher","DOI":"10.1016\/0021-9681(87)90171-8"},{"key":"e_1_2_9_13_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jhealeco.2004.09.011"},{"key":"e_1_2_9_14_1","doi-asserted-by":"publisher","DOI":"10.1212\/CPJ.0000000000000531"},{"key":"e_1_2_9_15_1","doi-asserted-by":"publisher","DOI":"10.1212\/CPJ.0000000000000646"},{"key":"e_1_2_9_16_1","doi-asserted-by":"publisher","DOI":"10.1212\/CPJ.0000000000000645"},{"key":"e_1_2_9_17_1","doi-asserted-by":"publisher","DOI":"10.1136\/jnnp.74.9.1258"},{"key":"e_1_2_9_18_1","doi-asserted-by":"publisher","DOI":"10.1212\/01.wnl.0000180717.29273.12"},{"key":"e_1_2_9_19_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00415-017-8406-2"},{"key":"e_1_2_9_20_1","doi-asserted-by":"publisher","DOI":"10.1136\/jnnp.2005.083402"},{"key":"e_1_2_9_21_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12913-015-0810-7"},{"key":"e_1_2_9_22_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0022-510X(98)00214-7"},{"key":"e_1_2_9_23_1","doi-asserted-by":"publisher","DOI":"10.1002\/mus.26311"},{"key":"e_1_2_9_24_1","doi-asserted-by":"publisher","DOI":"10.1002\/mus.26606"}],"container-title":["Muscle &amp; Nerve"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/mus.28374","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,5,8]],"date-time":"2025-05-08T12:05:19Z","timestamp":1746705919000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/mus.28374"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,2,18]]},"references-count":23,"journal-issue":{"issue":"6","published-print":{"date-parts":[[2025,6]]}},"alternative-id":["10.1002\/mus.28374"],"URL":"https:\/\/doi.org\/10.1002\/mus.28374","archive":["Portico"],"relation":{},"ISSN":["0148-639X","1097-4598"],"issn-type":[{"value":"0148-639X","type":"print"},{"value":"1097-4598","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,2,18]]},"assertion":[{"value":"2024-05-14","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2025-02-09","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2025-02-18","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}