{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,2,8]],"date-time":"2026-02-08T04:32:20Z","timestamp":1770525140735,"version":"3.49.0"},"reference-count":18,"publisher":"S. Karger AG","issue":"1","license":[{"start":{"date-parts":[[2012,1,1]],"date-time":"2012-01-01T00:00:00Z","timestamp":1325376000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/www.karger.com\/Services\/SiteLicenses"},{"start":{"date-parts":[[2012,1,1]],"date-time":"2012-01-01T00:00:00Z","timestamp":1325376000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.karger.com\/Services\/SiteLicenses"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Horm Res Paediatr"],"published-print":{"date-parts":[[2012]]},"abstract":"<jats:p>&lt;b&gt;&lt;i&gt;Background\/Aims:&lt;\/i&gt;&lt;\/b&gt; Disorders of sex development (DSD) are congenital conditions in which chromosomal, gonadal, or anatomic sex development is atypical. Optimal management is patient- and family-centered and delivered by interdisciplinary teams. The present pilot study elicits concerns held by important stakeholders on issues affecting young patients with DSD and their families. &lt;b&gt;&lt;i&gt;Methods:&lt;\/i&gt;&lt;\/b&gt; Content from focus groups with expert clinicians (pediatric urologists (n = 7), pediatric endocrinologists (n = 10), mental health professionals (n = 4), DSD patient advocates (n = 4), and interviews with parents of DSD-affected children (newborn to 6 years; n = 11) was coded and content-analyzed to identify health-related quality of life issues. &lt;b&gt;&lt;i&gt;Results:&lt;\/i&gt;&lt;\/b&gt; Key stressors varied across stakeholder groups. In general, family-centered issues were noted more than child-centered. In the child-centered domain, providers worried more about physical functioning; family and advocates emphasized gender concerns and body image. In the family-centered domain, parental concerns about medication management outweighed those of providers. Advocates reported more stressors regarding communication\/information than other stakeholders. &lt;b&gt;&lt;i&gt;Conclusion:&lt;\/i&gt;&lt;\/b&gt; Variability exists across stakeholder groups in the key concerns affecting young children\/families with DSD. Interdisciplinary DSD healthcare team development should account for varying perspectives when counseling families and planning treatment.<\/jats:p>","DOI":"10.1159\/000339863","type":"journal-article","created":{"date-parts":[[2012,8,17]],"date-time":"2012-08-17T07:07:52Z","timestamp":1345187272000},"page":"40-46","source":"Crossref","is-referenced-by-count":21,"title":["Challenges of Disorders of Sex Development: Diverse Perceptions across Stakeholders"],"prefix":"10.1159","volume":"78","author":[{"given":"Barry A.","family":"Kogan","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Melissa","family":"Gardner","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Adrianne N.","family":"Alpern","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Laura M.","family":"Cohen","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Mary Beth","family":"Grimley","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Alexandra L.","family":"Quittner","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"David E.","family":"Sandberg","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"127","published-online":{"date-parts":[[2012,7,20]]},"reference":[{"key":"ref1","doi-asserted-by":"publisher","DOI":"10.1111%2Fj.1365-2702.2007.02006.x"},{"key":"ref2","doi-asserted-by":"publisher","DOI":"10.1007%2FBF00435967"},{"key":"ref3","doi-asserted-by":"publisher","DOI":"10.1007%2Fs11136-005-0580-5"},{"key":"ref4","doi-asserted-by":"publisher","DOI":"10.1542%2Fpeds.2006-0738"},{"key":"ref5","doi-asserted-by":"publisher","DOI":"10.1097%2F01.ju.0000138519.12573.3a"},{"key":"ref6","doi-asserted-by":"publisher","DOI":"10.1111%2Fj.1365-2702.2008.02710.x"},{"key":"ref7","doi-asserted-by":"publisher","DOI":"10.1186%2F1477-7525-4-79"},{"key":"ref8","doi-asserted-by":"publisher","DOI":"10.1093%2Fjpepsy%2Fjsn038"},{"key":"ref9","doi-asserted-by":"publisher","DOI":"10.1046%2Fj.1528-1157.2002.32201.x"},{"key":"ref10","doi-asserted-by":"publisher","DOI":"10.1002%2Fppul.21164"},{"key":"ref11","doi-asserted-by":"publisher","DOI":"10.1093%2Fjpepsy%2Fjsm064"},{"key":"ref12","doi-asserted-by":"publisher","DOI":"10.1515%2FJPEM.2001.14.9.1575"},{"key":"ref13","doi-asserted-by":"publisher","DOI":"10.1001%2Farchpedi.158.5.426"},{"key":"ref14","doi-asserted-by":"publisher","DOI":"10.1097%2F01.ten.0000081687.21823.d4"},{"key":"ref15","doi-asserted-by":"publisher","DOI":"10.1016%2Fj.neurenf.2008.06.002"},{"key":"ref16","doi-asserted-by":"publisher","DOI":"10.1186%2F1687-9856-2010-275213"},{"key":"ref17","doi-asserted-by":"publisher","DOI":"10.1186%2F1687-9856-2010-919707"},{"key":"ref18","doi-asserted-by":"publisher","DOI":"10.1186%2F1687-9856-2010-692439"}],"container-title":["Hormone Research in Paediatrics"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.karger.com\/Article\/Pdf\/339863","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/www.karger.com\/Article\/Pdf\/339863","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,4,23]],"date-time":"2025-04-23T18:33:17Z","timestamp":1745433197000},"score":1,"resource":{"primary":{"URL":"https:\/\/karger.com\/article\/doi\/10.1159\/000339863"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2012]]},"references-count":18,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2012,8,1]]},"published-print":{"date-parts":[[2012,8,20]]}},"URL":"https:\/\/doi.org\/10.1159\/000339863","archive":["Portico"],"relation":{},"ISSN":["1663-2818","1663-2826"],"issn-type":[{"value":"1663-2818","type":"print"},{"value":"1663-2826","type":"electronic"}],"subject":[],"published":{"date-parts":[[2012]]}}}