{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,3]],"date-time":"2026-07-03T08:35:30Z","timestamp":1783067730765,"version":"3.54.6"},"reference-count":27,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2023,12,12]],"date-time":"2023-12-12T00:00:00Z","timestamp":1702339200000},"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":["American J of Med Genetics Pt C"],"published-print":{"date-parts":[[2024,3]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>Code status is a label in the medical record indicating a patient's wishes for end\u2010of\u2010life (EOL) care in the event of a cardiopulmonary arrest. People with intellectual disabilities had a higher risk of both diagnosis and mortality from coronavirus infections (COVID\u201019)\u00a0than the general population. Clinicians and disability advocates raised concerns that bias, diagnostic overshadowing, and ableism could impact the allocation of code status and treatment options, for patients with intellectual disabilities, including Down syndrome (DS). To study this, retrospective claims data from the Vizient\u00ae Clinical Data Base (used with permission of Vizient, all rights reserved.) of inpatient encounters with pneumonia (PNA) and\/or COVID\u201019 at 825 hospitals from January 2019 to June 2022 were included. Claims data was analyzed for risk of mortality and risk of \u201cDo Not Resuscitate\u201d (DNR) status upon admission, considering patient age, admission source, Elixhauser comorbidities (excluding behavioral health), and DS. Logistic regression models with backward selection were created. In total, 1,739,549 inpatient encounters with diagnoses of COVID\u201019, PNA, or both were included. After controlling for other risk factors, a person with a diagnosis of DS and a diagnosis of COVID\u201019 PNA had 6.321 odds ratio of having a DNR status ordered at admission to the hospital compared with those with COVID\u201019 PNA without DS. The diagnosis of DS had the strongest association with DNR status after controlling for other risk factors. Open and honest discussions among healthcare professionals to foster equitable approaches to EOL care and code status are needed.<\/jats:p>","DOI":"10.1002\/ajmg.c.32080","type":"journal-article","created":{"date-parts":[[2023,12,13]],"date-time":"2023-12-13T07:24:21Z","timestamp":1702452261000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":3,"title":["Retrospective review of the code status of individuals with <scp>Down<\/scp> syndrome during the <scp>COVID\u201019<\/scp> era"],"prefix":"10.1002","volume":"196","author":[{"given":"Jennifer","family":"Jett","sequence":"first","affiliation":[{"name":"Department of Palliative Care Intermountain Health  Salt Lake City Utah USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alexander","family":"Fossi","sequence":"additional","affiliation":[{"name":"Center for Autism and Neurodiversity Thomas Jefferson University  Philadelphia Pennsylvania USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Heather","family":"Blonsky","sequence":"additional","affiliation":[{"name":"Vizient, Inc.  Chicago Illinois USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Wendy","family":"Ross","sequence":"additional","affiliation":[{"name":"Center for Autism and Neurodiversity Thomas Jefferson University  Philadelphia Pennsylvania USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sabra","family":"Townsend","sequence":"additional","affiliation":[{"name":"Center for Autism and Neurodiversity Thomas Jefferson University  Philadelphia Pennsylvania USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mary M.","family":"Stephens","sequence":"additional","affiliation":[{"name":"Department of Family and Community Medicine Thomas Jefferson University  Philadelphia Pennsylvania USA"},{"name":"Center for Special Healthcare Needs, Christiana Care  Christiana Delaware USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Brian","family":"Chicoine","sequence":"additional","affiliation":[{"name":"Advocate Medical Group Adult Down Syndrome Center, Department of Family Medicine, Advocate Lutheran General Hospital  Park Ridge Illinois USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4172-0288","authenticated-orcid":false,"given":"Stephanie L.","family":"Santoro","sequence":"additional","affiliation":[{"name":"Division of Medical Genetics and Metabolism Massachusetts General Hospital  Boston Massachusetts USA"},{"name":"Department of Pediatrics Harvard Medical School  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2023,12,12]]},"reference":[{"key":"e_1_2_10_2_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.62355"},{"key":"e_1_2_10_3_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2021-050268"},{"key":"e_1_2_10_4_1","doi-asserted-by":"publisher","DOI":"10.1353\/pbm.2022.0014"},{"key":"e_1_2_10_5_1","doi-asserted-by":"publisher","DOI":"10.3122\/jabfm.2022.02.210371"},{"key":"e_1_2_10_6_1","doi-asserted-by":"publisher","DOI":"10.7326\/M20-4986"},{"key":"e_1_2_10_7_1","doi-asserted-by":"publisher","DOI":"10.1097\/00005650-199801000-00004"},{"key":"e_1_2_10_8_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.resplu.2021.100102"},{"key":"e_1_2_10_9_1","doi-asserted-by":"publisher","DOI":"10.1097\/JMQ.0000000000000112"},{"key":"e_1_2_10_10_1","unstructured":"Gleason J. Ross W. Stephens M. M. Tobias J. &Fossi A.(2021).The devastating impact of Covid\u201019 on individuals with intellectual disabilities in the United States. 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