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Attitudes towards “disorders of sex development” nomenclature among affected individuals

  • Emilie K. Johnson
    Correspondence
    Correspondence to: E.K. Johnson, Ann & Robert H. Lurie Children's Hospital of Chicago, Division of Urology, 225 East Chicago Avenue, Box 24, Chicago, IL 60611-2605, USA, Tel.: +1 312 227 6340; fax: +1 312 227 9560
    Affiliations
    Division of Urology, Ann & Robert H. Lurie Children's Hospital of Chicago, IL, USA

    Department of Urology, Northwestern University Feinberg School of Medicine, Chicago, IL, USA

    Center for Healthcare Studies, Northwestern University Feinberg School of Medicine, Chicago, IL, USA
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  • Ilina Rosoklija
    Affiliations
    Division of Urology, Ann & Robert H. Lurie Children's Hospital of Chicago, IL, USA
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  • Courtney Finlayson
    Affiliations
    Division Endocrinology, Ann & Robert H. Lurie Children's Hospital of Chicago, IL, USA

    Department of Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, IL, USA
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  • Diane Chen
    Affiliations
    Division of Adolescent Medicine, Ann & Robert H. Lurie Children's Hospital of Chicago, IL, USA

    Department of Psychiatry and Behavioral Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, USA
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  • Elizabeth B. Yerkes
    Affiliations
    Division of Urology, Ann & Robert H. Lurie Children's Hospital of Chicago, IL, USA

    Department of Urology, Northwestern University Feinberg School of Medicine, Chicago, IL, USA
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  • Mary Beth Madonna
    Affiliations
    Division of Pediatric Surgery, Ann & Robert H. Lurie Children's Hospital of Chicago, IL, USA

    Department of Surgery, Northwestern University Feinberg School of Medicine, Chicago, IL, USA
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  • Jane L. Holl
    Affiliations
    Center for Healthcare Studies, Northwestern University Feinberg School of Medicine, Chicago, IL, USA
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  • Arlene B. Baratz
    Affiliations
    Androgen Insensitivity Syndrome-Differences of Sex Development Support Group, University of Nevada, Las Vegas, NV, USA

    Department of Radiology, Temple University School of Medicine, Philadelphia, PA, USA
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  • Georgiann Davis
    Affiliations
    Androgen Insensitivity Syndrome-Differences of Sex Development Support Group, University of Nevada, Las Vegas, NV, USA

    Department of Sociology, University of Nevada, Las Vegas, NV, USA
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  • Earl Y. Cheng
    Affiliations
    Division of Urology, Ann & Robert H. Lurie Children's Hospital of Chicago, IL, USA

    Department of Urology, Northwestern University Feinberg School of Medicine, Chicago, IL, USA
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      Summary

      Introduction

      Although now commonly used in medicine, the updated “disorders of sex development” (DSD) nomenclature formally introduced in 2006 has never been universally accepted by members of the affected community, particularly advocacy groups. Use of this nomenclature by medical professionals may unintentionally negatively affect access to healthcare and research for individuals with DSD conditions.

      Objective

      Among individuals affected by various DSD diagnoses, this study sought to (1) evaluate attitudes towards potentially controversial DSD terminology, (2) determine potential impact of terminology on how affected individuals access healthcare, and (3) explore alternate terms.

      Study design

      A web-based survey was developed in collaboration with the AIS-DSDSG (Androgen Insensitivity Syndrome–DSD Support Group) leadership. AIS-DSDSG members (caregivers and affected individuals) were surveyed about attitudes towards DSD, potential impact on healthcare utilization, and alternate terms. A qualitative analysis of reasons for using/avoiding specific terms was performed.

      Results

      Surveys were completed by 202 out of 580 (35%) AIS-DSDSG members (61% affected, 39% caregivers; 16% non-gender binary; age range of affected individuals 0–86 years). Only 24% use disorder of sex development to describe themselves/their child. A majority (69%) had a negative emotional experience because of clinical use of nomenclature; 81% changed their care because of it. Preferred and non-preferred terms for clinical care and research are illustrated in the figure. Preferred diagnostic terms were intersex, variation in sex development, and difference of sex development (55%, 52%, and 50% liked/strongly liked, respectively). Disorder of sex development was not preferred (17% liked/strongly liked). About one-third reported that they would not attend a clinic named the Disorder of Sex Development Clinic. Overall, 81% provided qualitative comments; flexible terminology use was a key theme.

      Discussion

      These study findings are consistent with previous studies that demonstrated negative perceptions of DSD nomenclature. This study adds to previous findings by surveying a large group of affected individuals with a range of diagnoses, and by exploring emotional impact and healthcare utilization. Several possible alternative terms were also defined. The study was limited by inclusion of only members of AIS-DSDSG, a convenience sample where complete AIS is over-represented, and whose views may not represent the opinion of all individuals with DSD conditions.

      Conclusions

      Fig
      Graphical AbstractRatings of terms used in clinical care and to describe research studies.

      Keywords

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