{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,12]],"date-time":"2026-03-12T01:25:56Z","timestamp":1773278756102,"version":"3.50.1"},"reference-count":25,"publisher":"Wiley","issue":"10","license":[{"start":{"date-parts":[[2021,6,24]],"date-time":"2021-06-24T00:00:00Z","timestamp":1624492800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"},{"start":{"date-parts":[[2021,6,24]],"date-time":"2021-06-24T00:00:00Z","timestamp":1624492800000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["American J of Med Genetics Pt A"],"published-print":{"date-parts":[[2021,10]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:p>Transition to adulthood is a multifaceted process that requires integration of numerous domains within a young person's life, including their health care. For children with special health care needs, the transition process can be markedly more difficult to navigate. This is especially true for children with Down syndrome (DS) who receive fewer transition planning services. The aim of this needs assessment was to identify current trends, potential gaps, and areas for targeted intervention within the current transition landscape for individuals with DS. We utilized DS\u2010Connect, a National Institutes of Health (NIH) funded family\/self\u2010advocate survey repository, as a platform to recruit respondents to the \u201cTransition to Adulthood\u201d survey. Sixty\u2010five respondents (64 parents and 1 caregiver) completed the survey. Responses indicated that 42% of respondents reported comfort in the transition process, but 5% or less reported completing one of the core transition outcomes: transition readiness assessment, portable medical summary, or written transition plan. These findings translated across other domains of respondents' lives. While many individuals with DS and their caregivers are aware of the transition process, there appears to be a disconnect between the introduction of transition concepts and an actualization of transition outcomes necessary for success.<\/jats:p>","DOI":"10.1002\/ajmg.a.62403","type":"journal-article","created":{"date-parts":[[2021,6,24]],"date-time":"2021-06-24T09:04:28Z","timestamp":1624525468000},"page":"3019-3027","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":12,"title":["Health care transition for individuals with Down syndrome: A needs assessment"],"prefix":"10.1002","volume":"185","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-8891-8438","authenticated-orcid":false,"given":"Jordan Seth","family":"VanZant","sequence":"first","affiliation":[{"name":"Department of Pediatrics UPMC Children's Hospital of Pittsburgh  Pittsburgh Pennsylvania USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Andrew A.","family":"McCormick","sequence":"additional","affiliation":[{"name":"Down Syndrome Center of Western Pennsylvania  Pittsburgh Pennsylvania USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2021,6,24]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2011-0969"},{"key":"e_1_2_9_3_1","doi-asserted-by":"crossref","first-page":"1304","DOI":"10.1542\/peds.110.S3.1304","article-title":"A consensus statement on health care transitions for young adults with special health care needs","volume":"110","author":"American Academy of Pediatrics, American Academy of Family Physicians and American College of Physicians\u2010American Society of Internal Medicine","year":"2002","journal-title":"Pediatrics"},{"key":"e_1_2_9_4_1","doi-asserted-by":"publisher","DOI":"10.1016\/1054-139X(93)90143-D"},{"key":"e_1_2_9_5_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2011-1605"},{"key":"e_1_2_9_6_1","doi-asserted-by":"publisher","DOI":"10.1002\/bdra.20294"},{"key":"e_1_2_9_7_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2014-1909"},{"key":"e_1_2_9_8_1","doi-asserted-by":"publisher","DOI":"10.1001\/jamapediatrics.2015.3168"},{"key":"e_1_2_9_9_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpeds.2017.05.066"},{"key":"e_1_2_9_10_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpeds.2015.08.005"},{"key":"e_1_2_9_11_1","doi-asserted-by":"publisher","DOI":"10.3748\/wjg.v23.i13.2365"},{"key":"e_1_2_9_12_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2012-3050"},{"key":"e_1_2_9_13_1","volume-title":"Down syndrome clinic listing","author":"National Down Syndrome Congress","year":"2020"},{"key":"e_1_2_9_14_1","doi-asserted-by":"publisher","DOI":"10.2105\/ajph.82.3.364"},{"key":"e_1_2_9_15_1","volume-title":"The post\u2010high school outcomes of young adults with disabilities up to 8years after high school. A report from the National Longitudinal Transition Study\u20102 (NLTS2) (NCSER 2011\u20103005)","author":"Newman L.","year":"2011"},{"key":"e_1_2_9_16_1","doi-asserted-by":"publisher","DOI":"10.1111\/cch.12534"},{"key":"e_1_2_9_17_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.peds.2018.01.072"},{"key":"e_1_2_9_18_1","doi-asserted-by":"publisher","DOI":"10.1111\/dme.12485"},{"key":"e_1_2_9_19_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.110.S3.1307"},{"key":"e_1_2_9_20_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.62169"},{"key":"e_1_2_9_21_1","doi-asserted-by":"publisher","DOI":"10.1002\/mrdd.20157"},{"key":"e_1_2_9_22_1","volume-title":"Six core elements of health care transition","author":"The National Alliance to Advance Adolescent Health","year":"2014"},{"key":"e_1_2_9_23_1","volume-title":"Incorporating health care transition services into preventive care for adolescents and young adults: A toolkit for clinicians","author":"White P.","year":"2018"},{"key":"e_1_2_9_24_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2018-2587"},{"key":"e_1_2_9_25_1","doi-asserted-by":"publisher","DOI":"10.1007\/978-3-319-47143-3_7"},{"key":"e_1_2_9_26_1","doi-asserted-by":"publisher","DOI":"10.1016\/s0140-6736(02)08092-3"}],"container-title":["American Journal of Medical Genetics Part A"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/ajmg.a.62403","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1002\/ajmg.a.62403","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/ajmg.a.62403","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,3,11]],"date-time":"2026-03-11T10:55:01Z","timestamp":1773226501000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/ajmg.a.62403"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2021,6,24]]},"references-count":25,"journal-issue":{"issue":"10","published-print":{"date-parts":[[2021,10]]}},"alternative-id":["10.1002\/ajmg.a.62403"],"URL":"https:\/\/doi.org\/10.1002\/ajmg.a.62403","archive":["Portico"],"relation":{},"ISSN":["1552-4825","1552-4833"],"issn-type":[{"value":"1552-4825","type":"print"},{"value":"1552-4833","type":"electronic"}],"subject":[],"published":{"date-parts":[[2021,6,24]]},"assertion":[{"value":"2021-04-23","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2021-06-12","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2021-06-24","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}