The Decision-Making Process Regarding Ovarian Tissue Cryopreservation in Girls with Turner Syndrome by Patients, Parents, and Healthcare Providers: A Mixed-Methods Study

Overview

Journal Horm Res Paediatr

Publisher Karger

Specialties Endocrinology
Pediatrics

Date 2022 Jun 7

PMID 35671713

Authors

Sanne van der Coelen

Janielle van der Velden

Sapthami Nadesapillai

Ron Peek

Didi Braat

Myra Schleedoorn

Kathrin Fleischer

Anke Oerlemans

Affiliations

Soon will be listed here.

Abstract

Introduction: Ovarian tissue cryopreservation (OTC) has proven to be effective in other patient groups, but the effectiveness in girls with Turner syndrome (TS) is still unclear. Guidelines for counselling about OTC in TS are lacking. The aim of this study was to gain insight into the experiences of patients, parents, and healthcare providers with the decision-making process regarding OTC in girls with TS.

Methods: Within a year after counselling, a survey was sent to 132 girls with TS and their parents. Furthermore, focus groups were conducted with (1) gynaecologists with subspeciality reproductive medicine, (2) paediatric endocrinologists, (3) parents of girls aged 2-12, and (4) parents of girls aged 13-18. Transcripts were analysed using a thematic analysis approach.

Results: The response rate of the survey was 45%. Of the survey respondents, 90% appreciated counselling regarding their future parenting options and considered it an addition to existing healthcare. Girls with TS and their parents indicated that the option of OTC raised hope for future genetic offspring and instantly made them feel that their only option was to seize this opportunity. Gynaecologists and paediatricians found it challenging to truly make families grasp a realistic perspective of OTC in girls with TS.

Discussion And Conclusion: Offering young girls with TS the possibility of fertility preservation in an experimental setting raised high hopes and led to challenges for healthcare providers in ensuring a considered decision. The appropriate moment for counselling should be tailored to the individual and discussed with patient, parents, and paediatrician.

Citing Articles

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Navigating fertility dilemmas across the lifespan in girls with Turner syndrome-a scoping review.

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Hagen C, Fischer M, Mola G, Mikkelsen T, Cleemann L, Gravholt C Front Endocrinol (Lausanne). 2023; 14:1173600.

PMID: 37455919 PMC: 10339808. DOI: 10.3389/fendo.2023.1173600.

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