When No One Has Asked Before: Engaging Young Adults, Parents and Clinicians to Shape Research on Survivorship Care After Fertility Tissue Preservation

Abstract

Background: As childhood cancer survival improves, attention has shifted to the long-term consequences of cancer treatment for health, identity, and life choices, with fertility impairment a significant concern. Fertility tissue preservation (FTP) offers infants and prepubertal children the potential to safeguard future reproductive choices and represents both a biomedical and psychological intervention.

In the absence of a survivorship care pathway or targeted follow-up between tissue preservation and later decision-making, the impact of FTP must be understood through patients’ lived experiences, including perceived autonomy and long-term acceptability. These outcomes are essential for meaningful evaluation and for developing patient-centered survivorship care.

Aims: To engage young people with stored fertility tissue, their parents, and healthcare professionals (HCP) in shaping the design and delivery of research on patient-centered survivorship care following FTP.

Methods: An iterative Patient and Public Involvement and Engagement (PPIE) approach was used, with methods designed to address the sensitivity of the topic, isolation, and potential power imbalances through informal one-to-one conversations, flexible online formats, optional small-group discussion, and emotional safeguarding. Reflexive practice was embedded to manage the researcher's role and ethical boundaries.

Results: PPIE enabled participation from five young adults aged 16-29 years and six parents who had not previously discussed their experiences of FTP within healthcare or research settings, and supported open discussion of emotionally sensitive concerns. Four HCP took part in individual interviews. We found critical gaps in communication, emotional support, and continuity of follow-up care within existing services, and a need for developmentally appropriate information and opportunities to revisit fertility discussions across adolescence and early adulthood. PPIE partners directly informed the priorities, design and data collection tools for the planned study.

Conclusion: PPIE was critical in shaping survivorship-focused FTP research and identifying service priorities in a sensitive and under-researched context, demonstrating the importance of tailored engagement approaches for effective patient involvement.