O-185 Evaluation of the decision-making process of girls with Turner syndrome and their parents considering ovarian tissue cryopreservation
Authors: Coelen S. Van der , Schleedoorn M , Nadesapillai S , Peek R , Braat D , Velden J. Van der , Fleischer K , Oerlemans A 
Published: August 2021

Study question

What are the experiences with the decision-making process of girls with Turner syndrome (TS) considering ovarian tissue cryopreservation (OTC), their parents and healthcare providers?

Summary answer

Offering a new option to preserve fertility in TS caused unrealistic hope leading to challenges for healthcare providers to fulfil the ideal of informed consent.

What is known already

Due to premature ovarian insufficiency, girls with TS have only a small chance of genetic offspring. OTC might increase these odds. Healthcare providers and scientist are still cautious in offering OTC to girls with TS because of the many uncertainties regarding OTC in this patient group. Hence, OTC is now offered to girls with TS between 2 and 18 years old in a research setting: the TurnerFertility study.

Study design, size, duration

A retrospective qualitative study consisting of a survey and focus groups. Within a year after counselling, families (n = 132) received a survey with 30 questions regarding their experiences with the decision-making process and also an invitation for a focus group. The focus groups were conducted between January and October 2019 and lasted 51-84 minutes. The topic lists were based on literature research and survey results. Results were analysed following a thematic analysis approach.

Participants/materials, setting, methods

This is a sub-study of the prospective intervention study within an academical medical centre. Focus groups were composed through purposive sampling. Focus group 1 (FG1) consisted of five gynaecologists involved in counselling, FG2 with seven paediatricians who referred girls for counselling, FG3 with nine parents of girls with TS between 2 and 12 years old and FG4 with three parents of girls with TS between 13 and 17 years old.

Main results and the role of chance

90% of survey respondents appreciated counselling regarding fertility options and considered it an enrichment of existing healthcare. The individual consultation was rated as most contributing by 66% of the survey respondents, followed by the information meeting (37%) and decision aid (3%). The focus groups revealed that many had not discussed options for future parenthood with a healthcare provider before. Girls with TS and their parents indicated that the option of OTC raised hope for future genetic offspring, and at once made them feel like they had no choice but to take this chance. The small chance of success did not influence the decision for families who opted for OTC. Some parents who had to decide for their young daughter accepted OTC to give their daughter the option to decide herself whether to make use of the cryopreserved tissue later in life. Gynaecologists found it challenging to truly make families grasp a realistic perspective of OTC in TS and the associated mental and physical risks. Gynaecologists and paediatricians struggled with conflicting moral principles of non-maleficence against respect for autonomy: healthcare providers recognized the scientific relevance for the TS population, while it felt inconsistent with the disproportionate burden for some individual patients.

Limitations, reasons for caution

Because there was no validated survey for this topic in TS, we developed a survey based on literature research and experiences of a dedicated TS team. Among the survey responders and focus group participants a greater proportion decided for OTC compared to the overall counselled group (75% vs 60%).

Wider implications of the findings

This study gives insight in the issues to consider when implementing new technologies regarding fertility, in which parents have to decide for their child, where it is expected that anticipated decision regret plays a major role, or where healthcare providers experience conflicting duties as scientist and physician.

Trial registration number

not applicable