{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,2,19]],"date-time":"2026-02-19T12:59:06Z","timestamp":1771505946784,"version":"3.50.1"},"reference-count":51,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2023,11,9]],"date-time":"2023-11-09T00:00:00Z","timestamp":1699488000000},"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>Patients with Down syndrome have significant specialized health care needs. Our objective was to understand the needs, satisfaction, and online habits of caregivers as they care for persons with Down syndrome. A mixed\u2010method survey was distributed through REDCap from April 2022 to June 2022 in the United States; a Spanish\u2010translated version was distributed through SurveyMonkey from August 2022 to March 2023 in Mexico. We received 290 completed responses from the United States and 58 from caregivers in Mexico. We found that current health care options are not meeting the needs of many individuals with DS in both the United States (39.7%) and Mexico (46.6%). Caregivers expressed frustrations with the inaccessibility and inapplicability of health care information. In particular, they often found the volume of information overwhelming, given their limited medical background. Additionally, health care recommendations were not customized and lacked practical recommendations. Most caregivers in both the United States (72.1%) and Mexico (82.8%) believe it is not easy to find answers to medical questions about their loved ones with DS. Online platforms with customized, specific health information related to DS could offer innovative solutions to these unmet needs for families and primary care providers.<\/jats:p>","DOI":"10.1002\/ajmg.c.32074","type":"journal-article","created":{"date-parts":[[2023,11,10]],"date-time":"2023-11-10T07:05:21Z","timestamp":1699599921000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["Health care satisfaction and medical literacy habits among caregivers of individuals with Down syndrome"],"prefix":"10.1002","volume":"196","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-4019-5266","authenticated-orcid":false,"given":"Heidi","family":"Berger","sequence":"first","affiliation":[{"name":"Simpson College, Department of Mathematics  Indianola Iowa USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jill","family":"Wittman","sequence":"additional","affiliation":[{"name":"Charlotte North Carolina USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Katelyn","family":"Smith","sequence":"additional","affiliation":[{"name":"Simpson College, Department of Mathematics  Indianola Iowa USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Nora","family":"Horick","sequence":"additional","affiliation":[{"name":"Biostatistics Center Massachusetts General Hospital  Boston Massachusetts USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kenneth","family":"Norris","sequence":"additional","affiliation":[{"name":"Simpson College, Department of Mathematics  Indianola Iowa USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Allison","family":"Young","sequence":"additional","affiliation":[{"name":"Simpson College, Department of Mathematics  Indianola Iowa USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1081-6997","authenticated-orcid":false,"given":"Javier","family":"Magana Gomez","sequence":"additional","affiliation":[{"name":"Nutrition Faculty Autonomous University of Sinaloa  Culiacan Sinaloa Mexico"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kenia Kristel Esparza","family":"Ocampo","sequence":"additional","affiliation":[{"name":"Nutrition Faculty Autonomous University of Sinaloa  Culiacan Sinaloa Mexico"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5232-9882","authenticated-orcid":false,"given":"Brian G.","family":"Skotko","sequence":"additional","affiliation":[{"name":"Down Syndrome Program, Division of Medical Genetics and Metabolism, Department of Pediatrics Harvard Medical School  Boston Massachusetts USA"},{"name":"Department of Pediatrics Harvard Medical School  Boston Massachusetts USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2023,11,9]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2014.304"},{"key":"e_1_2_9_3_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41572-019-0143-7"},{"key":"e_1_2_9_4_1","doi-asserted-by":"publisher","DOI":"10.18233\/APM42No3pp142-1482176"},{"key":"e_1_2_9_5_1","doi-asserted-by":"publisher","DOI":"10.1053\/jpdn.2001.23157"},{"key":"e_1_2_9_6_1","doi-asserted-by":"publisher","DOI":"10.1080\/13645579.2016.1252188"},{"key":"e_1_2_9_7_1","doi-asserted-by":"publisher","DOI":"10.1002\/bdra.20404"},{"key":"e_1_2_9_8_1","doi-asserted-by":"publisher","DOI":"10.1145\/3579545"},{"key":"e_1_2_9_9_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2022-057010"},{"key":"e_1_2_9_10_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ejmg.2022.104550"},{"key":"e_1_2_9_11_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41436-020-01033-5"},{"key":"e_1_2_9_12_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.63250"},{"key":"e_1_2_9_13_1","doi-asserted-by":"publisher","DOI":"10.1097\/00002820-200511000-00009"},{"key":"e_1_2_9_14_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.61044"},{"key":"e_1_2_9_15_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pedhc.2022.08.002"},{"key":"e_1_2_9_16_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pedhc.2021.10.003"},{"key":"e_1_2_9_17_1","doi-asserted-by":"publisher","DOI":"10.1038\/sj.sc.3101364"},{"key":"e_1_2_9_18_1","doi-asserted-by":"publisher","DOI":"10.46292\/sci20-00032"},{"key":"e_1_2_9_19_1","unstructured":"GBD Results. (2019).Institute for Health Metrics and Evaluation. Retrieved September 27 2023 fromhttps:\/\/vizhub.healthdata.org\/gbd-results"},{"key":"e_1_2_9_20_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.37001"},{"key":"e_1_2_9_21_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jbi.2019.103208"},{"key":"e_1_2_9_22_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jbi.2008.08.010"},{"key":"e_1_2_9_23_1","doi-asserted-by":"publisher","DOI":"10.1111\/jir.12791"},{"key":"e_1_2_9_24_1","doi-asserted-by":"publisher","DOI":"10.1111\/jppi.12471"},{"key":"e_1_2_9_25_1","doi-asserted-by":"publisher","DOI":"10.1056\/NEJM198112033052312"},{"key":"e_1_2_9_26_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.clon.2007.02.005"},{"key":"e_1_2_9_27_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpeds.2019.10.058"},{"key":"e_1_2_9_28_1","doi-asserted-by":"publisher","DOI":"10.2196\/jmir.1548"},{"key":"e_1_2_9_29_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.62635"},{"key":"e_1_2_9_30_1","doi-asserted-by":"publisher","DOI":"10.1037\/apl0001050"},{"key":"e_1_2_9_31_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.63069"},{"key":"e_1_2_9_32_1","doi-asserted-by":"publisher","DOI":"10.1080\/1034912X.2020.1749572"},{"key":"e_1_2_9_33_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ridd.2021.104113"},{"key":"e_1_2_9_34_1","doi-asserted-by":"publisher","DOI":"10.1177\/002188638602200207"},{"key":"e_1_2_9_35_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0208076"},{"key":"e_1_2_9_36_1","unstructured":"Matheis M. Takahashi K. &Richard S.(2023).Bots are getting smarter: Online survey data collection in the age of sophisticated AI. Retrieved October 21 2023 fromhttps:\/\/hdl.handle.net\/10125\/104883"},{"key":"e_1_2_9_37_1","doi-asserted-by":"publisher","DOI":"10.1080\/10790268.2009.11754556"},{"key":"e_1_2_9_38_1","doi-asserted-by":"publisher","DOI":"10.4018\/978-1-4666-7409-7.ch007"},{"key":"e_1_2_9_39_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12916-020-01556-3"},{"key":"e_1_2_9_40_1","doi-asserted-by":"publisher","DOI":"10.1016\/S2214-109X(23)00007-4"},{"key":"e_1_2_9_41_1","doi-asserted-by":"publisher","DOI":"10.1080\/14737167.2020.1734453"},{"key":"e_1_2_9_42_1","doi-asserted-by":"publisher","DOI":"10.1080\/09638280902751972"},{"key":"e_1_2_9_43_1","doi-asserted-by":"publisher","DOI":"10.33937\/reveco.2021.218"},{"key":"e_1_2_9_44_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.62169"},{"key":"e_1_2_9_45_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.bmhimx.2014.09.002"},{"key":"e_1_2_9_46_1","doi-asserted-by":"publisher","DOI":"10.9790\/0837-2405053138"},{"key":"e_1_2_9_47_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.35795"},{"issue":"6","key":"e_1_2_9_48_1","first-page":"1031","article-title":"Health care management of adults with Down syndrome","volume":"64","author":"Smith D. S.","year":"2001","journal-title":"American Family Physician"},{"key":"e_1_2_9_49_1","first-page":"273","volume-title":"Handbook of qualitative research","author":"Strauss A.","year":"1994"},{"key":"e_1_2_9_50_1","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2020.17024"},{"key":"e_1_2_9_51_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.hlpt.2018.03.002"},{"key":"e_1_2_9_52_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1083-6101.2005.tb00259.x"}],"container-title":["American Journal of Medical Genetics Part C: Seminars in Medical Genetics"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/ajmg.c.32074","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,3,12]],"date-time":"2024-03-12T05:26:43Z","timestamp":1710221203000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/ajmg.c.32074"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,11,9]]},"references-count":51,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2024,3]]}},"alternative-id":["10.1002\/ajmg.c.32074"],"URL":"https:\/\/doi.org\/10.1002\/ajmg.c.32074","archive":["Portico"],"relation":{},"ISSN":["1552-4868","1552-4876"],"issn-type":[{"value":"1552-4868","type":"print"},{"value":"1552-4876","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,11,9]]},"assertion":[{"value":"2023-08-05","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2023-10-06","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2023-11-09","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}],"article-number":"e32074"}}