{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,29]],"date-time":"2026-04-29T02:57:25Z","timestamp":1777431445596,"version":"3.51.4"},"reference-count":56,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2022,2,9]],"date-time":"2022-02-09T00:00:00Z","timestamp":1644364800000},"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":[[2022,5]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Introduction\/Aims<\/jats:title><jats:p>The multidisciplinary Duchenne muscular dystrophy (DMD) Care Considerations were developed to standardize care and improve outcomes. We provide cumulative cost estimates for selected key preventive (ie, excluding new molecular therapies and acute care) elements of the care considerations in eight domains (neuromuscular, rehabilitation, respiratory, cardiac, orthopedic, gastrointestinal, endocrine, psychosocial management) independent of completeness of uptake or provision of nonpreventive care.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>We used de\u2010identified insurance claims data from a large midwestern commercial health insurer during 2018. We used Current Procedural Terminology and national drug codes to extract unit costs for clinical encounters representing key preventive elements of the DMD Care Considerations. We projected per\u2010patient cumulative costs from ages 5 to 25\u2009years for these elements by multiplying a schedule of recommended frequencies of preventive services by unit costs in 2018\u2009US dollars.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Assuming a diagnosis at age 5\u2009years, independent ambulation until age 11, and survival until age 25, we estimated 670 billable clinical events. The 20\u2010year per\u2010patient cumulative cost was $174 701 with prednisone ($2.3 million with deflazacort) and an expected total of $12 643 ($29 194) for out\u2010of\u2010pocket expenses associated with those events and medications.<\/jats:p><\/jats:sec><jats:sec><jats:title>Discussion<\/jats:title><jats:p>Standardized monitoring of disease progression and treatments may reduce overall costs of illness. Costs associated with these services would be needed to quantify potential savings. Our approach demonstrates a method to estimate costs associated with implementation of preventive care schedules.<\/jats:p><\/jats:sec>","DOI":"10.1002\/mus.27505","type":"journal-article","created":{"date-parts":[[2022,1,22]],"date-time":"2022-01-22T16:09:14Z","timestamp":1642867754000},"page":"574-580","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":8,"title":["Direct costs of adhering to selected Duchenne muscular dystrophy Care Considerations: Estimates from a midwestern state"],"prefix":"10.1002","volume":"65","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-8633-966X","authenticated-orcid":false,"given":"Kristin M.","family":"Conway","sequence":"first","affiliation":[{"name":"Department of Epidemiology, College of Public Health The University of Iowa  Iowa City Iowa USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Scott D.","family":"Grosse","sequence":"additional","affiliation":[{"name":"National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention  Atlanta Georgia USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lijing","family":"Ouyang","sequence":"additional","affiliation":[{"name":"National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention  Atlanta Georgia USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Natalie","family":"Street","sequence":"additional","affiliation":[{"name":"National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention  Atlanta Georgia USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5393-9984","authenticated-orcid":false,"given":"Paul A.","family":"Romitti","sequence":"additional","affiliation":[{"name":"Department of Epidemiology, College of Public Health The University of Iowa  Iowa City Iowa USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2022,2,9]]},"reference":[{"key":"e_1_2_11_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1474-4422(09)70272-8"},{"key":"e_1_2_11_3_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1474-4422(09)70271-6"},{"key":"e_1_2_11_4_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1474-4422(18)30026-7"},{"key":"e_1_2_11_5_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1474-4422(18)30024-3"},{"key":"e_1_2_11_6_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1474-4422(18)30025-5"},{"key":"e_1_2_11_7_1","doi-asserted-by":"publisher","DOI":"10.1371\/currents.md.5f533e6e60ee172d6bf6b2b8375dfadf"},{"key":"e_1_2_11_8_1","doi-asserted-by":"publisher","DOI":"10.18553\/jmcp.2017.23.6.633"},{"key":"e_1_2_11_9_1","doi-asserted-by":"publisher","DOI":"10.1002\/mus.23942"},{"key":"e_1_2_11_10_1","doi-asserted-by":"publisher","DOI":"10.1177\/0883073808314962"},{"key":"e_1_2_11_11_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2017-4006"},{"key":"e_1_2_11_12_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ppedcard.2018.01.012"},{"key":"e_1_2_11_13_1","doi-asserted-by":"publisher","DOI":"10.3233\/JND-180317"},{"key":"e_1_2_11_14_1","doi-asserted-by":"publisher","DOI":"10.4187\/respcare.04676"},{"key":"e_1_2_11_15_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2018-0333H"},{"key":"e_1_2_11_16_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2018-0333N"},{"key":"e_1_2_11_17_1","doi-asserted-by":"publisher","DOI":"10.3233\/JND-140053"},{"key":"e_1_2_11_18_1","unstructured":"LinGA KoolaC WaltonS.Institute for Clinical and Economic ReviewDeflazacort Eteplirsen and Golodirsen for Duchenne Muscular Dystrophy: Effectiveness and Value Evidence Report July 11 2019 prepared for the New England CEPAC (Comparative Effectiveness Public Advisory Council).https:\/\/icer.org\/wp-content\/uploads\/2020\/10\/ICER_DMD_Evidence-Report_071619.pdf. 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