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Fertility in Individuals with Differences in Sex Development: Provider Knowledge Assessment

  • Courtney Finlayson
    Correspondence
    Address correspondence to: Courtney Finlayson, MD, Division of Endocrinology, Department of Pediatrics, Ann & Robert H. Lurie Children's Hospital of Chicago, Northwestern University Feinberg School of Medicine, 225 E. Chicago Ave, Box 54, Chicago, IL 60611; Phone (312) 227-6090
    Affiliations
    Division of Endocrinology, Ann & Robert H. Luire Children's Hospital of Chicago, Northwestern University Feinberg School of Medicine
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  • Emilie K. Johnson
    Affiliations
    Division of Urology, Ann & Robert H. Luire Children's Hospital of Chicago, Northwestern University Feinberg School of Medicine
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  • Diane Chen
    Affiliations
    Division of Adolescent Medicine, Ann & Robert H. Luire Children's Hospital of Chicago, Northwestern University Feinberg School of Medicine

    Department of Psychiatry and Behavioral Health Ann & Robert H. Lurie Children's Hospital of Chicago, Northwestern University Feinberg School of Medicine, Chicago, Illinois
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  • Patricia Y. Fechner
    Affiliations
    Department of Pediatrics, University of Washington School of Medicine, Division of Pediatric Endocrinology, Seattle Children's Hospital, Seattle, Washington
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  • Josephine Hirsch
    Affiliations
    Division of Urology, Ann & Robert H. Luire Children's Hospital of Chicago, Northwestern University Feinberg School of Medicine
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  • Ilina Rosoklija
    Affiliations
    Division of Urology, Ann & Robert H. Luire Children's Hospital of Chicago, Northwestern University Feinberg School of Medicine
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  • Tara Schafer-Kalkhoff
    Affiliations
    Division of Endocrinology, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio
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  • Margarett Shnorhavorian
    Affiliations
    Department of Urology, University of Washington School of Medicine, Division of Pediatric Urology, Seattle Children's Hospital, Seattle, Washington
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  • Veronica Gomez-Lobo
    Affiliations
    Pediatric and Adolescent Gynecology, Eunice Kennedy Shriver National Institute of Child Health and Human Development, Bethesda, Maryland
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Published:March 13, 2022DOI:https://doi.org/10.1016/j.jpag.2022.02.004

      Abstract

      Objective

      Infertility is common among individuals with differences in sex development (DSD), and affected individuals and families desire fertility counseling. This survey sought to assess fertility knowledge and experiences with fertility counseling among DSD specialists for DSD conditions excluding congenital adrenal hyperplasia.

      Design, Setting, Participants, and Measures

      A survey was iteratively developed by members of the DSD-Translational Research Network (DSD-TRN) Fertility Preservation Workgroup and disseminated to 5 clinician groups: the DSD-TRN, the Society for Pediatric Psychology DSD Special Interest Group (SIG), the Pediatric Endocrine Society DSD-SIG, the Societies for Pediatric Urology, and the North American Society for Pediatric and Adolescent Gynecology.

      Results

      Completed surveys (n = 110) were mostly from pediatric urology (40.3%), gynecology (25.4%), and endocrinology (20.9%) specialists. Most (73/108, 67.6%) respondents reported discussing fertility potential. Sixty-seven responded to questions regarding fertility potential. Many participants answered questions about the presence of a uterus in individuals with 46,XY complete gonadal dysgenesis and about the potential for viable oocytes in individuals with 46,XY partial gonadal dysgenesis incorrectly. Comments acknowledged the need for further education on fertility in individuals with DSD.

      Conclusions

      Many DSD providers have some knowledge of fertility potential, but knowledge gaps remain. Experts expressed a desire for education and accessible resources to counsel effectively about fertility potential for individuals with DSD.

      Key Words

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