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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Article info
Publication history
Published online: March 13, 2022
Accepted:
February 19,
2022
Received in revised form:
February 4,
2022
Received:
August 10,
2021
Footnotes
Conflict of Interest Statement: The authors have no conflicts of interest to declare.
Funding Sources: This study was developed and funded as part of the DSD-TRN R01 HD068138
Identification
Copyright
© 2022 North American Society for Pediatric and Adolescent Gynecology. Published by Elsevier Inc. All rights reserved.
