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The International Turner Syndrome Consensus Group developed clinical practice guidelines to improve this transition. This study sought to evaluate how effectively they have been implemented and whether they align with the priorities of women with TS and families of girls and women with TS. A web\u2010based survey was offered to those affiliated with major TS support organizations, with 1338 successfully responding (<jats:italic>n<\/jats:italic>\u00a0=\u2009543 women [\u226518\u2009years]; <jats:italic>n<\/jats:italic>\u00a0=\u2009232 parents of a woman [\u226518\u2009years]; and <jats:italic>n<\/jats:italic>\u00a0=\u2009563 parents of a girl with TS [&lt;18\u2009years]). Findings demonstrated that while most women transitioned to adult primary care providers, follow\u2010up with key specialists was lacking. Women and families prioritized flexibility in appointments and designating one provider to oversee all their TS\u2010related care. They identified health care coverage as a barrier to receiving care. The transition process to adult care and independence commonly occurred after girls become legal adults. Together, these findings serve to inform strategies to improve the delivery of transitional care for girls and women with TS.<\/jats:p>","DOI":"10.1002\/ajmg.a.62564","type":"journal-article","created":{"date-parts":[[2021,11,13]],"date-time":"2021-11-13T17:08:46Z","timestamp":1636823326000},"page":"400-413","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":6,"title":["The transition to independence and adult care for women with Turner syndrome: Current status and priorities of 1338 women and parents"],"prefix":"10.1002","volume":"188","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-6618-6552","authenticated-orcid":false,"given":"Courtney S.","family":"Streur","sequence":"first","affiliation":[{"name":"Division of Pediatric Urology, Department of Urology University of Michigan  Ann Arbor Michigan USA"},{"name":"Susan B. Meister Child Health Evaluation and Research Center, Department of Pediatrics University of Michigan  Ann Arbor Michigan USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Emilia A.","family":"Floody","sequence":"additional","affiliation":[{"name":"Emory University School of Medicine  Atlanta Georgia USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Zoe K.","family":"Lapham","sequence":"additional","affiliation":[{"name":"Susan B. Meister Child Health Evaluation and Research Center, Department of Pediatrics University of Michigan  Ann Arbor Michigan USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7389-8283","authenticated-orcid":false,"given":"David E.","family":"Sandberg","sequence":"additional","affiliation":[{"name":"Susan B. Meister Child Health Evaluation and Research Center, Department of Pediatrics University of Michigan  Ann Arbor Michigan USA"},{"name":"Division of Pediatric Psychology, Department of Pediatrics University of Michigan  Ann Arbor Michigan USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2021,11,13]]},"reference":[{"doi-asserted-by":"publisher","key":"e_1_2_8_2_1","DOI":"10.1542\/peds.110.S3.1304"},{"doi-asserted-by":"publisher","key":"e_1_2_8_3_1","DOI":"10.1016\/j.ijporl.2018.07.038"},{"doi-asserted-by":"publisher","key":"e_1_2_8_4_1","DOI":"10.1001\/archpedi.160.2.178"},{"doi-asserted-by":"publisher","key":"e_1_2_8_5_1","DOI":"10.1016\/s0278-2626(03)00284-7"},{"doi-asserted-by":"publisher","key":"e_1_2_8_6_1","DOI":"10.1016\/j.ijporl.2020.110384"},{"doi-asserted-by":"publisher","key":"e_1_2_8_7_1","DOI":"10.1089\/jwh.2012.3931"},{"doi-asserted-by":"publisher","key":"e_1_2_8_8_1","DOI":"10.1530\/eje-17-0430"},{"doi-asserted-by":"publisher","key":"e_1_2_8_9_1","DOI":"10.1016\/j.jpurol.2016.04.015"},{"doi-asserted-by":"publisher","key":"e_1_2_8_10_1","DOI":"10.1542\/peds.2009-1255B"},{"doi-asserted-by":"publisher","key":"e_1_2_8_11_1","DOI":"10.1080\/09546634.2020.1782321"},{"doi-asserted-by":"publisher","key":"e_1_2_8_12_1","DOI":"10.1002\/ajmg.a.61310"},{"unstructured":"Marketing Charts. (2017).The majority of 18\u201024\u2010year olds live in their parent's home as do 1 in 6 older millenials.https:\/\/www.marketingcharts.com\/demographics-and-audiences-81471","key":"e_1_2_8_13_1"},{"doi-asserted-by":"publisher","key":"e_1_2_8_14_1","DOI":"10.1007\/s00345-020-03116-z"},{"doi-asserted-by":"publisher","key":"e_1_2_8_15_1","DOI":"10.1542\/peds.110.S3.1307"},{"doi-asserted-by":"publisher","key":"e_1_2_8_16_1","DOI":"10.1016\/j.jpurol.2019.10.017"},{"doi-asserted-by":"publisher","key":"e_1_2_8_17_1","DOI":"10.1016\/j.jpurol.2019.04.013"},{"doi-asserted-by":"publisher","key":"e_1_2_8_18_1","DOI":"10.1002\/ajmg.c.31676"},{"doi-asserted-by":"publisher","key":"e_1_2_8_19_1","DOI":"10.1016\/j.pec.2015.05.015"},{"doi-asserted-by":"publisher","key":"e_1_2_8_20_1","DOI":"10.1001\/jama.295.12.1374"},{"doi-asserted-by":"publisher","key":"e_1_2_8_21_1","DOI":"10.1177\/2042018817746291"},{"doi-asserted-by":"publisher","key":"e_1_2_8_22_1","DOI":"10.1038\/nn1008"},{"doi-asserted-by":"publisher","key":"e_1_2_8_23_1","DOI":"10.1002\/ajmg.a.30911"},{"doi-asserted-by":"publisher","key":"e_1_2_8_24_1","DOI":"10.1177\/0883073820939400"},{"unstructured":"U.S. Bureau of Labor Statistics. 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