PD02-11 WHEN AND HOW TO DISCLOSE GENITAL SURGERY TO GIRLS WITH CAH? EXPERIENCES AND PREFERENCES OF WOMEN WITH CAH
Notice bibliographique
Résumé
You have accessJournal of UrologyCME1 May 2022PD02-11 WHEN AND HOW TO DISCLOSE GENITAL SURGERY TO GIRLS WITH CAH? EXPERIENCES AND PREFERENCES OF WOMEN WITH CAH Ashley W. Johnston, Mimi S. Kim, Paul Kokorowski, Devon J. Hensel, Patrice M. Yasuda, and Konrad M. Szymanski Ashley W. JohnstonAshley W. Johnston More articles by this author , Mimi S. KimMimi S. Kim More articles by this author , Paul KokorowskiPaul Kokorowski More articles by this author , Devon J. HenselDevon J. Hensel More articles by this author , Patrice M. YasudaPatrice M. Yasuda More articles by this author , and Konrad M. SzymanskiKonrad M. Szymanski More articles by this author View All Author Informationhttps://doi.org/10.1097/JU.0000000000002517.11AboutPDF ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsReprints ShareFacebookLinked InTwitterEmail Abstract INTRODUCTION AND OBJECTIVE: To describe experiences and preferences of disclosing childhood genital surgery to females with congenital adrenal hyperplasia (CAH). METHODS: We conducted an anonymous cross-sectional online survey of CAH females (46XX, ≥16 years [y] old), living in Canada and the United States, who underwent genital surgery before age 4y. Data included experiences and preferences of initial (“first time you were told”) and complete disclosure (“told all details of the surgery”). Non-parametric statistics were used. RESULTS: Median age of 59 participants was 37y. The 76% of women who received complete disclosure were younger (median age: 33y) and underwent surgery more recently (median decade of surgery: 1980s) than the 14% who received only initial disclosure (median: 47y, 1970s) and 10% without any disclosure (median: 61y, 1960s, p=0.0003). Median age of initial and complete disclosure was 7-10y and 11-13y years, respectively (Table). Disclosure was preferred by 58 (98%) women, with initial disclosure by age 14y and complete disclosure by 18y. Most disclosures were by women’s mothers (initial: 82%, complete: 64%). Doctors were more involved in the complete (47%) vs. initial disclosures (13%, p<0.001), coinciding with women’s preferences to include their mothers (72%) and doctors (43%) in the disclosure process. Complete disclosure had predominately neutral/mixed and positive effects, rather than negative, on relationships with parents (neutral/mixed: 68%, positive: 18%, negative: 7%, unknown: 7%) and doctors (neutral/mixed: 64%, positive: 21%, negative: 14%, unknown: 2%). CONCLUSIONS: Disclosure of childhood genital surgery to women with CAH has increased over time. Although timing of disclosures varied, women preferred disclosure, initiating it before age 14y and complete disclosure before age 18y. Disclosure may benefit relationships with parents and physicians. Source of Funding: Departmental research funding © 2022 by American Urological Association Education and Research, Inc.FiguresReferencesRelatedDetails Volume 207Issue Supplement 5May 2022Page: e39 Advertisement Copyright & Permissions© 2022 by American Urological Association Education and Research, Inc.MetricsAuthor Information Ashley W. Johnston More articles by this author Mimi S. Kim More articles by this author Paul Kokorowski More articles by this author Devon J. Hensel More articles by this author Patrice M. Yasuda More articles by this author Konrad M. Szymanski More articles by this author Expand All Advertisement PDF DownloadLoading ...
Récupéré en direct depuis OpenAlex et désinversé. Les résumés ne sont pas conservés dans cette base de données : les index inversés représentent 8,6 Go des 9,3 Go de texte de la base, et le serveur dispose de 13 Go libres.
Comment cette classification a été obtenuedéplier
Prédiction distillée sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Apprise à partir de 10 348 étiquettes directes de Codex et de 10 348 étiquettes directes de Gemma. Le mode candidate est l'union des têtes enseignantes seuillées; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont ni des étiquettes humaines ni des étiquettes directes de modèles de pointe.
Scores Codex et Gemma par catégorie
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,000 | 0,000 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,000 | 0,000 |
| Bibliométrie | 0,000 | 0,000 |
| Études des sciences et des technologies | 0,000 | 0,000 |
| Communication savante | 0,000 | 0,000 |
| Science ouverte | 0,000 | 0,000 |
| Intégrité de la recherche | 0,000 | 0,000 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,000 | 0,000 |
Scores machine (provisoires)
Les deux têtes enseignantes du modèle étudiant, lues sur ce travail. Un score ordonne la base pour la relecture; il n'affirme jamais une catégorie, et le statut de validation accompagne chaque rangée tel quel.
Scores de référence d'un modèle non mature (critères de maturité non atteints, 7 itérations). Un score ordonne; il n'affirme jamais une catégorie.
score_only:v0-immature-baseline · tel quel depuis la passe de notation : score_only signifie que le nombre peut ordonner les travaux, et qu'aucune étiquette de catégorie n'en découleClassification
machine, non validéePrédiction automatique; un appel candidat d’une seule tête enseignante, pas un consensus.
Le détail, modèle par modèle et score par score, se trouve en fin de page sous « Comment cette classification a été obtenue ».