{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,12,31]],"date-time":"2025-12-31T18:00:59Z","timestamp":1767204059563,"version":"build-2238731810"},"reference-count":52,"publisher":"Frontiers Media SA","license":[{"start":{"date-parts":[[2022,6,24]],"date-time":"2022-06-24T00:00:00Z","timestamp":1656028800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["frontiersin.org"],"crossmark-restriction":true},"short-container-title":["Front. Endocrinol."],"abstract":"<jats:p>Klinefelter syndrome (KS) is the most common aneuploidy in men and has long-term sequelae on health and wellbeing. KS is a chronic, lifelong condition and adolescents\/young adults (AYAs) with KS face challenges in transitioning from pediatric to adult-oriented services. Discontinuity of care contributes to poor outcomes for health and wellbeing and transition programs for KS are lacking. We aimed to develop and test a mobile health tool (KS Transition Passport) to educate patients about KS, encourage self-management and support successful transition to adult-oriented care. First, we conducted a retrospective chart review and patient survey to examine KS transition at a university hospital. Second, we conducted a systematic scoping review of the literature on AYAs with KS. Last, we developed a mobile health transition passport and evaluated it with patient support groups. Participants evaluated the tool using the System Usability Scale and Patient Education Materials Assessment Tool (PEMAT). Chart review identified 21 AYAs diagnosed between 3.9-16.8 years-old (median 10.2 years). The survey revealed only 4\/10 (40%) were on testosterone therapy and fewer (3\/10, 30%) had regular medical care. The scoping review identified 21 relevant articles highlighting key aspects of care for AYAs with KS. An interprofessional team developed the mobile-health KS transition passport using an iterative process. Support group members (n=35) rated passport usability as \u2018ok\u2019 to \u2018good\u2019 (70 \u00b1 20, median 73.5\/100). Of PEMAT dimensions, 5\/6 were deemed \u2018high quality\u2019 (86-90\/100) and participants knew what to do with the information (actionability = 83\/100). In conclusion, many patients with KS appear to have gaps in transition to adult-oriented care. Iterative development of a KS transition passport produced a mobile health tool that was usable, understandable and had high ratings for actionability.<\/jats:p>","DOI":"10.3389\/fendo.2022.909830","type":"journal-article","created":{"date-parts":[[2022,6,24]],"date-time":"2022-06-24T07:13:38Z","timestamp":1656054818000},"update-policy":"https:\/\/doi.org\/10.3389\/crossmark-policy","source":"Crossref","is-referenced-by-count":6,"title":["Navigating Disrupted Puberty: Development and Evaluation of a Mobile-Health Transition Passport for Klinefelter Syndrome"],"prefix":"10.3389","volume":"13","author":[{"given":"Andrew A.","family":"Dwyer","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Vanessa","family":"H\u00e9ritier","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sofia","family":"Llahana","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lauren","family":"Edelman","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Georgios E.","family":"Papadakis","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Laurent","family":"Vaucher","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Nelly","family":"Pitteloud","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Michael","family":"Hauschild","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"1965","published-online":{"date-parts":[[2022,6,24]]},"reference":[{"key":"B1","doi-asserted-by":"publisher","first-page":"20","DOI":"10.1210\/jc.2012-2382","article-title":"Clinical Review: Klinefelter Syndrome\u2013a Clinical Update","volume":"98","author":"Groth","year":"2013","journal-title":"J Clin Endocrinol Metab"},{"key":"B2","doi-asserted-by":"publisher","DOI":"10.1210\/jcem-2-11-615","article-title":"Syndrome Characterized by Gynecomastia, Aspermatogenesis Without A-Leydigism and Increased Excretion of Follicle-Stimulating Hormone","volume":"11","author":"Klinefelter","year":"1942","journal-title":"J Clin Endocrinol Metab"},{"key":"B3","doi-asserted-by":"publisher","first-page":"389","DOI":"10.1210\/er.2017-00212","article-title":"Klinefelter Syndrome: Integrating Genetics, Neuropsychology, and Endocrinology","volume":"39","author":"Gravholt","year":"2018","journal-title":"Endocr Rev"},{"key":"B4","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.c.31782","article-title":"Human Sex Chromosome Aneuploidies: The Hypothalamic-Pituitary-Gonadal Axis","volume":"184","author":"Rogol","year":"2020","journal-title":"Am J Med Genet C Semin Med Genet"},{"key":"B5","doi-asserted-by":"publisher","DOI":"10.1210\/jc.2002-021491","article-title":"Prenatal and Postnatal Prevalence of Klinefelter Syndrome: A National Registry Study","volume":"88","author":"Bojesen","year":"2003","journal-title":"J Clin Endocrinol Metab"},{"key":"B6","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.c.31786","article-title":"Gonadal Dysfunction and Beyond: Clinical Challenges in Children, Adolescents, and Adults With 47,XXY Klinefelter Syndrome","volume":"184","author":"Zitzmann","year":"2020","journal-title":"Am J Med Genet C Semin Med Genet"},{"key":"B7","doi-asserted-by":"publisher","DOI":"10.3389\/fendo.2019.00825","article-title":"The Lived Experience of Klinefelter Syndrome: A Narrative Review of the Literature","volume":"10","author":"Hanna","year":"2019","journal-title":"Front Endocrinol (Lausanne)"},{"key":"B8","doi-asserted-by":"publisher","DOI":"10.1530\/EJE-14-0213","article-title":"Management of Klinefelter Syndrome During Transition","volume":"171","author":"Gies","year":"2014","journal-title":"Eur J Endocrinol"},{"key":"B9","doi-asserted-by":"publisher","DOI":"10.1530\/EC-20-0304","article-title":"Transition Readiness Among Adolescents With Rare Endocrine Conditions","volume":"10","author":"van Alewijk","year":"2021","journal-title":"Endocr Connect"},{"key":"B10","doi-asserted-by":"publisher","DOI":"10.2147\/JMDH.S80242","article-title":"The Extraordinary Kids Clinic: An Interdisciplinary Model of Care for Children and Adolescents With Sex Chromosome Aneuploidy","volume":"8","author":"Tartaglia","year":"2015","journal-title":"J Multidisc Healthc"},{"key":"B11","article-title":"Transitional Care in Endocrinology","volume-title":"Transition From Pediatric to Adult Healthcare Services for Adolescents and Young Adults With Long-Term Conditions","author":"Dwyer AAH","year":"2019"},{"key":"B12","doi-asserted-by":"publisher","first-page":"299","DOI":"10.1023\/B:QURE.0000018486.91360.00","article-title":"The World Health Organization's WHOQOL-BREF Quality of Life Assessment: Psychometric Properties and Results of the International Field Trial. 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