Attitudes toward “disorders of sex development” nomenclature: a multi-institutional survey of affected individuals and caregivers.
Anthony D'Oro, BA1, Ilina Rosoklija, MPH1, Deborah L. Jacobson, MD1, Courtney Finlayson, MD1, Diane Chen, PhD1, Duong D. Tu, MD2, Leena Nahata, MD3, Paul Kokorowski, MD4, Mimi S. Kim, MD4, Elizabeth B. Yerkes, MD1, Earl Y. Cheng, MD1, Emilie K. Johnson, MD, MPH1.
1Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA, 2Texas Children's Hospital, Houston, TX, USA, 3Nationwide Children's Hospital, Columbus, OH, USA, 4Children's Hospital Los Angeles, Los Angeles, CA, USA.
Background: Although the term “disorders of sex development” (DSD) was introduced in an effort to more sensitively describe conditions in which anatomical, gonadal, or chromosomal development are atypical, its reception has been mixed. Previous studies indicate that some affected individuals view the term negatively, but analyses were limited to specific diagnoses and to members of support/advocacy groups. The aim of this study was to survey a clinical population with DSD (and caregivers) regarding nomenclature.
Methods: English and Spanish-speaking affected individuals (age ≥15 years) and their caregivers presenting to 4 national clinics were recruited from 07/2016-05/2018. No diagnoses were excluded. Participants completed a survey rating various commonly used DSD terminology, specifically as it related to: 1) the identified patients’ diagnosis, 2) likelihood of participating in research, and 3) likelihood of attending a specialty clinic. Demographic information was collected. Responses were compared between subgroups, including affiliation with a support group.
Results: Of 139 potential participants approached, 105 completed the survey (76% response rate). Respondents were 92% English-speaking, 55% white, 30% Hispanic, and 83% parents/caregivers. Congenital adrenal hyperplasia (30%) was the most common diagnosis, and 80% of patients were diagnosed with a DSD before age 1 year (Table 1). Attitudes regarding DSD terminology to describe patients’ condition were varied: no term was viewed favorably or unfavorably at a rate above 50%. Instead, a plurality (31-45%) of respondents tended to view terms neutrally, with another notable percentage (15-27%) either endorsing “not sure” or neglecting to assess terms altogether. However, the terms “intersex” and “disorders of sex development” were the only terms viewed unfavorably by a plurality of respondents (43% and 31%, respectively). Respondents in support groups found 8/15 terms favorable and 4/15 terms unfavorable, whereas respondents not in support groups only found 1/15 terms favorable and 2/15 terms unfavorable. Both groups generally disliked the terms “intersex” and “disorders of sex development” (Table 2). Most respondents felt either neutral or comfortable participating in research studies using “disorders of sex development”, “differences of sex development”, and “DSD”, but a plurality were uncomfortable with studies that used “intersex” (28%). Preferred clinic names included: no reference to DSD terminology (59%), according specific “DSD” (52%), and “DSD Clinic” (52%).
Conclusions: Attitudes regarding DSD nomenclature are varied among a national, clinical population of affected individuals and their parents/caregivers. Our results support movement away from the term “intersex” but demonstrate little consensus, as we noted few highly favorable and few highly unfavorable responses about other terms. Although those in support groups had more definitive thoughts regarding nomenclature, our results indicate that a clinical population of patients with DSD and their caregivers tended to view the term “disorders of sex development” negatively as well.
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