Mottram Rebecca, Feltbower Richard, Jones Georgina Louise, Gelcich Sarah, McLean Katherine, Kelly Catherine, Glaser Adam
University of Leeds, Leeds, UK
University of Leeds, Leeds, UK.
BMJ Open. 2025 Jul 28;15(7):e088025. doi: 10.1136/bmjopen-2024-088025.
Childhood cancer treatment can cause subfertility in adulthood. Ovarian or testicular tissue preservation is a rapidly evolving field with significant potential benefits. However, the establishment of patient-centred reproductive survivorship pathways remains a challenge in clinical settings due to a lack of robust evidence to inform its development. Patient and public involvement and engagement (PPIE) consultation may help ensure that future studies align with patient needs and that tailored survivorship care pathways are developed for young people with preserved fertility tissue.
This PPIE consultation aimed to identify priority areas for future research that would support the development of a tailored survivorship care pathway for childhood cancer survivors who have preserved tissue for future fertility.
Recruitment occurred through national networks, including collaborations with advocacy groups such as Candlelighters and clinical networks. Data were collected via telephone or online unstructured interviews, with some supplementary email exchanges. Thematic analysis was used to identify emergent themes. The Guidance for Reporting Involvement of Patients and the Public (GRIPP)-2 guidelines were used to help guide PPIE.
An online focus group and/or a one-to-one interview with e-mail interactions.
In total, 12 unique participants took part in a focus group and/or interview. Participants included parents of children who had stored tissue, young adult cancer survivors with stored tissue and five clinicians from the leading National Health Service (NHS) centres in the UK.
Six key themes emerged that highlighted unmet needs and priority areas for research: (1) Lack of communication and information; (2) unmet needs in follow-up care; (3) emotional impact and psychological support; (4) importance of patient and parental involvement; (5) desire for information and education; and (6) long-term concerns and support. Parents, young adults and healthcare clinicians found talking about fertility issues difficult. They noted that consistency of care, education resources and access to emotional support were important areas where improvements could be made. We used thematic analysis to help identify patterns in the data, and we used the Guidance for Reporting Involvement of Patients and the Public (GRIPP)-2 reporting guidelines for PPIE work.
PPIE provided valuable insights into the experiences of childhood cancer survivors with preserved fertility tissue, their parents and clinicians, highlighting priority areas to guide future research and ensure it addresses the concerns of care recipients. Our findings suggest that childhood cancer survivors who preserve tissue for future fertility need personalised follow-up care with information and psychological support. A larger sample of participants, studied using a qualitative research design, is needed to capture the full range of experiences, needs and preferences and to ensure that care is inclusive and relevant to the wider population.
儿童癌症治疗可能导致成年后生育能力下降。卵巢或睾丸组织保存是一个快速发展的领域，具有显著的潜在益处。然而，由于缺乏有力证据来指导其发展，在临床环境中建立以患者为中心的生殖生存途径仍然是一项挑战。患者和公众参与及介入（PPIE）咨询可能有助于确保未来的研究符合患者需求，并为保存了生育组织的年轻人制定量身定制的生存护理途径。
本次PPIE咨询旨在确定未来研究的优先领域，以支持为保存了未来生育组织的儿童癌症幸存者制定量身定制的生存护理途径。
通过国家网络进行招募，包括与烛光基金会等倡导团体以及临床网络合作。通过电话或在线非结构化访谈收集数据，并进行一些补充电子邮件交流。采用主题分析法确定新出现的主题。使用《患者和公众参与报告指南》（GRIPP）-2指南来指导PPIE。
在线焦点小组和/或通过电子邮件互动进行一对一访谈。
共有12名不同的参与者参加了焦点小组和/或访谈。参与者包括储存了组织的儿童的父母、储存了组织的年轻成年癌症幸存者以及来自英国主要国民保健服务（NHS）中心的五名临床医生。
出现了六个关键主题，突出了未满足的需求和研究的优先领域：（1）缺乏沟通和信息；（2）后续护理中未满足的需求；（3）情感影响和心理支持；（4）患者和父母参与的重要性；（5）对信息和教育的渴望；（6）长期关注和支持。父母、年轻人和医疗保健临床医生发现谈论生育问题很困难。他们指出，护理的一致性、教育资源以及获得情感支持是可以改进的重要领域。我们使用主题分析法来帮助识别数据中的模式，并使用《患者和公众参与报告指南》（GRIPP）-2报告指南进行PPIE工作。
PPIE为保存了生育组织的儿童癌症幸存者、他们的父母和临床医生的经历提供了宝贵的见解，突出了优先领域，以指导未来的研究并确保其解决受护理者的担忧。我们的研究结果表明，为未来生育而保存组织的儿童癌症幸存者需要个性化的后续护理，包括信息和心理支持。需要更大规模的参与者样本，采用定性研究设计进行研究，以全面了解各种经历、需求和偏好，并确保护理具有包容性且与更广泛的人群相关。
