Introduction: Ovarian tissue cryopreservation (OTC) has proven to be effective in other patient groups, but the effectiveness in girls with 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 subspecialty reproductive medicine, (2) paediatric endocrinologists, (3) parents of girls aged 2 to 12, and, (4) parents of girls aged 13 to 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.


中文翻译：

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患者、父母和医疗保健提供者关于特纳综合征女孩卵巢组织冷冻保存的决策过程：一项混合方法研究

简介：卵巢组织冷冻保存 (OTC) 已被证明对其他患者群体有效，但对 TS 女孩的有效性仍不清楚。缺乏关于 TS 中 OTC 咨询的指南。本研究的目的是深入了解患者、父母和医疗保健提供者在 TS 女孩的 OTC 决策过程中的经验。方法：在咨询后的一年内，对 132 名患有 TS 的女孩及其父母进行了调查。此外，焦点小组由以下人员组成：(1) 具有生殖医学专业的妇科医生，(2) 儿科内分泌学家，(3) 2 至 12 岁女孩的父母，以及 (4) 13 至 18 岁女孩的父母。主题分析法。结果：调查的回复率为45%。在调查受访者中，90% 的人赞赏关于他们未来育儿选择的咨询，并认为这是对现有医疗保健的补充。患有TS的女孩和她们的父母表示，OTC的选择让她们对未来的基因后代燃起了希望，瞬间让她们觉得只有抓住这个机会才是唯一的选择。妇科医生和儿科医生发现，要真正让家庭对患有 TS 的女孩接受非处方药的现实观点具有挑战性。讨论和结论：为患有 TS 的年轻女孩提供在实验环境中保留生育能力的可能性提高了人们的期望，并给医疗保健提供者带来了挑战，以确保做出经过深思熟虑的决定。适当的咨询时间应因人而异，并与患者、父母和儿科医生讨论。