Meeting the needs of young cancer patients and their caregivers after fertility tissue preservation: A mixed methods study to inform a reproductive clinical care support tool.
Background: One in three children undergoing cancer treatment suffer harm to their ovaries or testicles which poses a threat to their future fertility. Those at highest risk may opt for ovarian or testicle tissue storage before treatment, with the hope of preserving future fertility. In the last decade, fertility tissue preservation (FTP) has become an established part of cancer care pathways, yet its effectiveness remains uncertain. Globally, only around 200 babies have been born from preserved ovarian tissue, and no births have resulted from preserved testicular tissue.
Clinical consensus is that every cancer patient should receive good quality survivorship care that is tailored to their specific needs. There currently no standard reproductive care pathway to deliver optimal care and support to these individuals as they transition into young adulthood.
Aim: To create an evidence-based, reproductive care support tool for healthcare professionals (HCP) who take care of young adults who store tissue after childhood cancer. This tool will help HCP provide personalised and consistent care that addresses their specific needs. This will be important as these young adults grow up and make use of their stored tissue.
Methods: Surveys will be sent to young adults and parents/guardians (n=1580), to collect data on their preferences and healthcare needs related to FTP. With participants’ consent, demographic and clinical data will also be collected. HCP (n=200) will also be sent a survey to share their thoughts. Semi-structured qualitative interviews using a topic guide will be conducted with a subset of survey respondents (n=18-60) to explore needs and preferences further. Survey data will be analysed using descriptive statistics. Interview data will be analysed using framework analysis. Data from surveys and interviews will be integrated using mixed-methods analysis and used to develop a care support tool that is acceptable to patients, parents and HCP after FTP. A collaborative stakeholder workshop will help refine the tool, ensuring its suitability for clinical settings and identifying the necessary resources and support for its implementation.
Impact: The perspectives of TYA with stored tissue have yet to influence service development. This study will bridge this gap by developing a tool to facilitate comprehensive and personalised care following FTP, including coordinated assessment, planning, communication, and evaluation. This will help healthcare professionals focus on addressing the specific needs of patients and families as the young person transitions to adulthood, improving well-being and driving standardisation of care practices. This will lead to better outcomes, reduced practice variations and enhanced overall quality of care after FTP.
Contact: Rebecca Mottram, Study coordinator and Principal Investigator
University of Leeds, School of Medicine, Worsley Building, Clarendon Way, Leeds LS2 9JT.
r.mottram@leeds.ac.uk