Abstract
Research question
What are the considerations of girls with Turner syndrome and their parents to opt
for or against ovarian tissue cryopreservation (OTC)?
Design
Semi-structured in-depth interviews were conducted with girls with Turner syndrome
and their parents until data saturation was reached. Participants were recruited through
purposive sampling. Data were analysed using a thematic analysis approach.
Results
Thirteen parents and five girls who opted for OTC, and seven parents and three girls
who declined OTC, were interviewed. Parents and girls mentioned that OTC offered hope,
an opportunity to have genetic offspring and clarity about their current fertility
status. Most participants were not afraid of the risks of surgery and trusted healthcare
providers with this procedure. In contrast, families had to deal with uncertainties,
owing to the lack of information on the success rate and long-term consequences of
OTC in this group. Families indicated that they had to go through an important decision-making
process in a short period of time, because of the limited number of participants in
the OTC study.
Conclusion
A new opportunity and hope for future fertility were considerations for opting for
OTC. However, OTC also came with uncertainties owing to the experimental nature of
this procedure in girls with Turner syndrome. Healthcare providers could share these
experiences with girls with Turner syndrome and their parents to improve fertility-preservation
counselling in this group.
KEYWORDS
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Biography
Sapthami Nadesapillai is a physician in reproductive medicine at the Department of Obstetrics and Gynaecology of the Radboudumc, the Netherlands. She is currently combining her clinical work with a PhD project that focuses on different aspects of fertility preservation in girls with Turner syndrome.
Key message
Making a decision about ovarian tissue cryopreservation is challenging for girls with Turner syndrome and their parents. This experimental procedure offered hope for genetic offspring, but outcome and long-term consequences remain uncertain. Physicians can use our findings to improve fertility preservation counselling in girls with Turner syndrome.
Article info
Publication history
Published online: March 03, 2023
Accepted:
February 23,
2023
Received in revised form:
January 25,
2023
Received:
October 19,
2022
Declaration: The authors report no financial or commercial conflicts of interest.Identification
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© 2023 The Author(s). Published by Elsevier Ltd on behalf of Reproductive Healthcare Ltd.
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