Patient and Parent Perceptions of Disorders of Sex Development Terminology: A Pilot Study.

Diagnostic terminology used for disorders of sex development (DSD) has been controversial even before the introduction of the umbrella term at the 2006 International Consensus Conference on Intersex. Agreement on nomenclature can enhance communication among clinicians, researchers, patients, and their families. However, disagreements over the implications of nomenclature can also result in a proliferation of terms contributing to confusion. The objective of this pilot study was to assess the connotative meaning assigned by adolescent patients with a DSD and parents to the terms used to describe their medical condition. In a sample of 27 adolescents/young adults with a DSD and 22 of their parents/caregivers recruited from three pediatric medical centers in mid-West and mid-Atlantic states, a semantic rating scale measuring self-esteem was used to characterize the connotative meaning ascribed to the person's specific diagnosis (or anatomical phenotype), the umbrella terms "disorders of sex development," "intersex," and "yourself"/"your child." Youth and parents rated themselves or their children more positively compared to how they rated either the specific diagnosis, the umbrella terms DSD or intersex. The ratings for the latter three terms were generally neutral and did not significantly differ from each other. These pilot findings suggest that neither youth with DSD nor their parents equate the person with their diagnosis. They also evaluated the person more positively than any of the diagnostic or umbrella terms rated. In contrast with previous studies assessing "preferences" for particular terms, this study suggests a novel strategy for assessing the personal "meanings" ascribed to each.