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Satisfaction, disappointment and regret surrounding fertility preservation decisions in the paediatric and adolescent cancer population

Abstract

Purpose

With over 80% of paediatric and adolescent cancer patients surviving into adulthood, quality-of-life issues such as future fertility are increasingly important. However, little is known about regret around decisions to pursue or forgo fertility preservation (FP). We investigated the risk of decision regret in families involved in making a FP decision and explored contributive factors.

Methods

Parents and patients ≥ 15 years were invited to participate. Participants completed a 10-item survey, including a validated Decision Regret Scale. Scores ≥ 30 indicated high regret. Free-text response items allowed participants to provide reasons for satisfaction or regret.

Results

A total of 108 parents and 30 patients participated. Most (81.4%) reported low regret (mean score 13.7). On multivariate analysis, predictors of low regret included having a FP procedure and a fertility discussion pre-treatment. Most participants believed that FP offers hope for future fertility. Some reported dissatisfaction with the process of decision-making.

Conclusion

Overall levels of regret in the study population were low, with factors associated with quality, timely discussion and belief in the success of FP technology being predictors of low regret. However, dissatisfaction with the decision-making process itself revealed that refinements to the programme are required to meet families’ needs.

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Acknowledgements

We thank Hannah Clark for her contribution to the oncofertility database, which was sourced for oncofertility data and Matthew Kemertzis for his contribution to this body of work as the past Fertility Preservation Taskforce project manager.

Funding

The research was supported by the Victorian Cancer Agency (ECSG13027). YJ is funded by the Victorian Cancer Agency and is a National Health and Medical Research Council Translation of Research into Clinical Practice (TRIP) fellow. MP is supported by a NBCF Early Career Fellowship (ECF-0015).

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Authors

Contributions

Conception and design: All authors

Data acquisition: SJ and NL

Data analysis: SJ, MP, LG, and interpreted by all authors.

Manuscript: SJ wrote the first draft of the manuscript. All authors critically revised one or more versions of the manuscript and approved the final version.

Corresponding author

Correspondence to Sadunee Jayasuriya.

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All authors declare they have no competing interests/conflicts of interest.

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All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

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Informed consent was obtained from all individual participants included in the study.

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Jayasuriya, S., Peate, M., Allingham, C. et al. Satisfaction, disappointment and regret surrounding fertility preservation decisions in the paediatric and adolescent cancer population. J Assist Reprod Genet 36, 1805–1822 (2019). https://doi.org/10.1007/s10815-019-01536-4

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Keywords

  • Fertility preservation
  • Decision regret
  • Paediatric
  • Oncofertility
  • Decision-making