背景:儿童期癌症治疗可导致成年期不孕。生育组织保存提供了一种保护未来生育的方法,特别是对于青春期前的儿童,其保存选择是有限的。虽然这是一项重大的技术进步,与其他生育力保存方法相比,它也提出了独特的挑战。临床共识是,所有儿童癌症患者都应该接受高质量的治疗,个性化生存护理以及医疗保健政策和实践必须解决护理接受者的期望和优先事项。我们报告了癌症幸存者为将来的生育保存组织的经验的现有信息,支持由受助人的观点和经验提供信息的生存护理的发展,以确定未来的研究重点。
方法:我们根据JoannaBriggs研究所的建议以及用于范围审查的系统审查和Meta分析扩展(PRISMA-ScR)进行了范围审查。我们搜索了包括在儿童和成年早期接受生育组织保存(FTP)的患者报告结果的研究,癌症诊断后,包括父母报告的结果。我们的搜索词旨在确定有关卵巢和睾丸组织保存的文献报道。我们搜查了Embase,Cinahl,PsycInfo,Medline,Scopus和Cochrane系统评论数据库以及灰色文献来源,相关文章,包括1980年至2023年之间的所有时间框架,并得到利兹大学独立信息专家的支持。描述性统计用于分析数据,我们以表格形式显示结果以总结关键信息。
结果:来自1956年的唯一记录,5符合我们的纳入标准。没有发现文献报道了储存睾丸组织的人的经历。现有文献仅包括来自储存卵巢组织的人的报告。我们发现,储存卵巢组织的年轻女性在癌症后的生殖决定中面临复杂的情感和道德困境,并强烈希望自己的生物孩子。
结论:这项范围审查是首次报告超出临床结果的报告,特别关注癌症诊断后早期保留卵巢组织的患者的自我报告结果。它为他们的经验提供了宝贵的见解,并强调了卵巢组织冷冻保存(OTC)与其他形式的生育力保存相比存在明显的挑战。我们建议单独考虑具有储存的生育组织的患者的需求,并呼吁进一步研究以实现个性化的生存护理。为长期福祉开发量身定制的护理途径,患者报告的结果也需要从储存睾丸组织的个体,同意存放孩子的纸巾的父母,以及参与他们护理的医疗保健专业人员。这篇评论强调了FTP的快速进步与解决这些进步的全面护理的可用性之间的重大证据差距。随着FTP科学的发展,患者在整个生存过程中需要详细的信息以做出明智的决定,并为其独特的生殖和内分泌健康问题提供持续的支持.
BACKGROUND: Childhood cancer treatment can lead to subfertility in adulthood. Fertility tissue preservation offers a way to safeguard future fertility, especially for prepubescent children, whose preservation options are limited. While this is a significant technological advance, it also presents unique challenges compared to other methods of fertility preservation. Clinical consensus is that all childhood cancer patients should receive high-quality, personalised survivorship care and that healthcare policy and practice must address the expectations and priorities of care recipients. We report the available information on the experiences of cancer survivors who preserved tissue for future fertility, to support the development of survivorship care informed by recipients\' perspectives and experiences to identify future research priorities.
METHODS: We conducted a scoping review following the recommendations of the Joanna Briggs Institute and the Systematic Reviews and Meta-Analyses Extension for Scoping Review (PRISMA-ScR). We searched for research that included patient reported outcomes from patients who underwent fertility tissue preservation (FTP) in childhood and early adulthood, following a cancer diagnosis, including outcomes reported by parents. Our search terms aimed to identify literature reporting on both ovarian and testicular tissue preservation. We searched Embase, Cinahl, PsycInfo, Medline, Scopus and Cochrane Database of Systematic Reviews alongside sources of grey literature, for relevant articles including all time-frames between 1980-2023, with support from an independent information specialist at the University of Leeds. Descriptive statistics were used to analyze the data and we present the results in tabular form to summarise the key information.
RESULTS: From 1956 unique records, 5 met our inclusion criteria. No literature was found reporting on the experiences of people who stored testicular tissue. The available literature only included reports from people who had stored ovarian tissue. We found that young women who had stored ovarian tissue faced complex emotional and ethical dilemmas in reproductive decisions post cancer and strongly desired their own biological children.
CONCLUSIONS: This scoping review is the first to report beyond clinical outcomes by focusing specifically on the self-reported outcomes of patients who preserved ovarian tissue in early life after a cancer diagnosis. It provides valuable insights into their experiences and highlights that ovarian tissue cryopreservation (OTC) presents distinct challenges compared to other forms of fertility preservation. We recommend separate consideration of the needs of patients with stored fertility tissue and call for further research to enable personalized survivorship care. To develop tailored care pathways for long-term well-being, patient-reported outcomes are also needed from individuals with stored testicular tissue, parents who consented to their child\'s tissue storage, and the healthcare professionals involved in their care. This review underscores a significant evidence gap between rapid FTP advancements and the availability of comprehensive care addressing these advancements. As FTP science evolves, patients need detailed information for informed decisions and ongoing support for their unique reproductive and endocrine health concerns throughout their survivorship journey.