Parental Perception of Terminology of Disorders of Sex Development in Western Turkey

Basit Öğe Kaydı
dc.contributor.authorTiryaki, Sibel
dc.contributor.authorTekin, Ali
dc.contributor.authorYağmur, İsmail
dc.contributor.authorÖzen, Samim
dc.contributor.authorÖzbaran, Burcu
dc.contributor.authorŞimşek, Ruhsar Damla Gökşen
dc.contributor.authorUlman, İbrahim
dc.date.accessioned2020-12-01T12:33:08Z
dc.date.available2020-12-01T12:33:08Z
dc.date.issued2018
dc.departmentEge Üniversitesien_US
dc.description.abstractObjective: Disorders of sex development (DSD) is a nomenclature intended to defeat the discomfort of families and patients and has found worldwide usage. the aim of this study was to address the perception and usage of terminology among the parents of DSD patients in a tertiary center in western Turkey. Methods: the records of the DSD council (multidisciplinary team where each patient with DSD is discussed) between years 2008-2015 were reviewed retrospectively. Data including details of the management process, patient characteristics and follow-up details were noted. Then inquiries reflecting parental perception about terminology were implemented during clinical visits. Results: in total, 121 patients were evaluated in monthly meetings of the DSD council and 79 inquiries were completed. Fifty-one percent of the families admitted knowing the terms DSD, ambiguous genitalia, “dubious genitals” and intersex. However, only 2% preferred using DSD, 6% intersex and 14% ambiguous genitalia. Fifty-two percent of the parents used a disease name in Latin (mostly hypospadias) addressing the disorder. the offspring of 69% of the parents who were familiar with the name “dubious genitals” were diagnosed in the neonatal period. the preferred terminology used by parents was strongly associated with the terminology used most commonly in the medical speciality their child most often attended. Conclusion: Each country has its own social norms. We suggest therefore that local committees including medical professionals, patients and families should be employed to develop proper terminology.en_US
dc.identifier.doi10.4274/jcrpe.0007
dc.identifier.endpage222en_US
dc.identifier.issn1308-5727
dc.identifier.issn1308-5735
dc.identifier.issue3en_US
dc.identifier.startpage216en_US
dc.identifier.urihttps://doi.org/10.4274/jcrpe.0007
dc.identifier.urihttps://app.trdizin.gov.tr//makale/TXpBM09EVTVPUT09
dc.identifier.urihttps://hdl.handle.net/11454/66468
dc.identifier.volume10en_US
dc.indekslendigikaynakTR-Dizinen_US
dc.language.isoenen_US
dc.relation.ispartofJournal of Clinical Research in Pediatric Endocrinologyen_US
dc.relation.publicationcategoryMakale - Ulusal Hakemli Dergi - Kurum Öğretim Elemanıen_US
dc.rightsinfo:eu-repo/semantics/openAccessen_US
dc.subjectEndokrinoloji ve Metabolizmaen_US
dc.subjectPediatrien_US
dc.titleParental Perception of Terminology of Disorders of Sex Development in Western Turkeyen_US
dc.typeArticleen_US

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