Poster Presentations

Parental View on the Terminology of Disorders of Sex Development

  • Sibel Tiryaki
  • Ali Tekin
  • İsmail Yağmur
  • Samim Özen
  • Burcu Özbaran
  • Damla Gökşen
  • Şükran Darcan
  • İbrahim Ulman
  • Ali Avanoğlu

J Clin Res Pediatr Endocrinol 2017;9(1):1-2

Disorders of sex development (DSD) is a nomenclature proposed to defeat the discomfort of families and patients. The aim of this study was to investigate the perception and usage of terminology among the parents of DSD patients in our country.

The records of the DSD council between years 2008-2015 were reviewed retrospectively. Parents were contacted through telephone inquiries focusing on the terminology the parents knew and tend to use.

In total, 121 patients were evaluated in monthly meetings of DSD council and 79 inquiries were completed. Median age at diagnosis was 1 year (0-16 years). Forty-one percent of the patients were diagnosed in the newborn period. Median follow-up was 5 years (1-19 years). Follow-up period was longer than five years in 56%. About half of the families admitted knowing the terms DSD, ambiguous genitalia, indeterminate 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 addressing the disorder. Sixty-nine percent who were familiar with the name indeterminate genitals were diagnosed in the neonatal period (p=0.046). The clinic mostly involved in the management was related to referring the disease with a name in Latin (p=0.024) or as chromosomal abnormality (p=0.048).

Parents of DSD patients avoid using any word containing “sex” and prefer disease names in Latin instead. Direct translation and usage of new terminology may not achieve the desired result. Each country has its own social norms, local committees should be employed to develop proper terminology.