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Attitudes toward fertility-related care and education of adolescents and young adults with differences of sex development: Informing future care models

  • Lauren E. Corona
    Affiliations
    Division of Urology, Department of Surgery, Ann & Robert H. Lurie Children's Hospital of Chicago, 225 E. Chicago Ave, Chicago, IL, 60611, USA

    Department of Urology, Northwestern Feinberg School of Medicine, 420 E. Superior St. Chicago, IL, 60611, USA
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  • Josephine Hirsch
    Affiliations
    Division of Urology, Department of Surgery, Ann & Robert H. Lurie Children's Hospital of Chicago, 225 E. Chicago Ave, Chicago, IL, 60611, USA
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  • Ilina Rosoklija
    Affiliations
    Division of Urology, Department of Surgery, Ann & Robert H. Lurie Children's Hospital of Chicago, 225 E. Chicago Ave, Chicago, IL, 60611, USA
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  • Elizabeth B. Yerkes
    Affiliations
    Division of Urology, Department of Surgery, Ann & Robert H. Lurie Children's Hospital of Chicago, 225 E. Chicago Ave, Chicago, IL, 60611, USA

    Department of Urology, Northwestern Feinberg School of Medicine, 420 E. Superior St. Chicago, IL, 60611, USA
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  • Emilie K. Johnson
    Correspondence
    Correspondence to: Emilie K. Johnson, Ann & Robert H. Lurie Children's Hospital of Chicago, Division of Urology 225 East Chicago Avenue, Box 24 Chicago, 60611-2605, IL, USA, Tel.: +1 312 227 6340; fax: +1 312 227 9560
    Affiliations
    Division of Urology, Department of Surgery, Ann & Robert H. Lurie Children's Hospital of Chicago, 225 E. Chicago Ave, Chicago, IL, 60611, USA

    Department of Urology, Northwestern Feinberg School of Medicine, 420 E. Superior St. Chicago, IL, 60611, USA
    Search for articles by this author

      Summary

      Introduction

      Adolescents and young adults (AYA) with differences of sex development (DSD) face many challenging healthcare decisions. Fertility preservation is an emerging but experimental option for AYA with DSD. Optimal counseling regarding future fertility options has not yet been defined for this population.

      Objective

      To examine the fertility-related attitudes and experiences of AYA with DSD to inform future care needs.

      Study design

      Semi-structured interviews were conducted from 2015 to 2018 with AYA with a DSD diagnosis who were seen in our multidisciplinary clinic. Topics covered included attitudes toward fertility and family building, fertility-related communication, and perspectives on fertility-related education and decision-making. Qualitative content analysis was performed using an inductive and deductive approach.

      Results

      Eight AYA (median age 17 years, range 14–28) with various DSD diagnoses (Mayer-Rokitansky-Küster-Hauser syndrome, complete androgen insensitivity syndrome, congenital adrenal hyperplasia, and 46, XY DSD unspecified) participated. AYA were open to many options related to family building and fertility preservation, desired full disclosure of information, and recognized the importance of an age-related progression to autonomy in decision-making. Spanning all topics, the following were salient: 1) diversity of attitudes and care preferences amongst participants, 2) evolution of these attitudes and preferences over time, and 3) an emphasis on individualization of education and care (Fig. 1).

      Discussion

      This qualitative study provided information on the fertility-related experiences and attitudes of AYA with DSD. Prior studies have shown a diversity of patient and parent preferences in many aspects of DSD research as well as low rates of fertility-related education and satisfaction therefrom. The knowledge gained from this study can be used to guide individualized and compassionate education and care surrounding the complex and evolving topic of fertility. This study is limited by interviews being conducted prior to the implementation of our DSD-specific gonadal tissue cryopreservation protocol. Despite this, the fertility-related patient experiences and attitudes prior to protocol implementation are important to present. The results from the preliminary analysis of these data were used to inform a new, ongoing qualitative study to explore the patient experience with fertility preservation in a more targeted fashion.

      Conclusions

      Summary figure
      Graphical AbstractVisual abstract depicting attitudes toward fertility-related care and education of AYA and young adults with differences of sex development.

      Keywords

      Abbreviations:

      DSD (Differences of Sex Development), GTC (Gonadal Tissue Cryopreservation), AYA (Adolescents and young adults), EMR (electronic medical record)
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