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Journal of Assisted Reproduction and Genetics

, Volume 36, Issue 9, pp 1805–1822 | Cite as

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

  • Sadunee JayasuriyaEmail author
  • Michelle Peate
  • Catherine Allingham
  • Nancy Li
  • Lynn Gillam
  • Margaret Zacharin
  • Peter Downie
  • Paddy Moore
  • Leanne Super
  • Lisa Orme
  • Franca Agresta
  • Catharyn Stern
  • Yasmin Jayasinghe
Fertility Preservation

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.

Keywords

Fertility preservation Decision regret Paediatric Oncofertility Decision-making 

Notes

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.

Author contribution

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.

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).

Compliance with ethical standards

Conflict of interest

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

Ethical approval

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.

Informed consent

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

Supplementary material

10815_2019_1536_MOESM1_ESM.pdf (90 kb)
Supplemental Digital Content 1. Study questionnaire in table format.pdf (PDF 89 kb)

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Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2019

Authors and Affiliations

  • Sadunee Jayasuriya
    • 1
    • 2
    • 3
    Email author
  • Michelle Peate
    • 3
  • Catherine Allingham
    • 2
    • 3
  • Nancy Li
    • 2
    • 3
  • Lynn Gillam
    • 4
    • 5
  • Margaret Zacharin
    • 6
    • 7
  • Peter Downie
    • 8
    • 9
  • Paddy Moore
    • 2
  • Leanne Super
    • 9
    • 10
  • Lisa Orme
    • 9
  • Franca Agresta
    • 11
  • Catharyn Stern
    • 11
    • 12
  • Yasmin Jayasinghe
    • 2
    • 3
    • 7
  1. 1.Monash UniversityClaytonAustralia
  2. 2.Department of Paediatric & Adolescent GynaecologyThe Royal Children’s HospitalParkvilleAustralia
  3. 3.Department of Obstetrics & Gynaecology, The Royal Women’s HospitalUniversity of MelbourneParkvilleAustralia
  4. 4.Melbourne School of Population and Global HealthParkvilleAustralia
  5. 5.Children’s Bioethics CentreThe Royal Children’s HospitalParkvilleAustralia
  6. 6.Department of EndocrinologyThe Royal Children’s HospitalParkvilleAustralia
  7. 7.Murdoch Children’s Research InstituteParkvilleAustralia
  8. 8.Department of PaediatricsClaytonAustralia
  9. 9.Children’s Cancer CentreThe Royal Children’s HospitalParkvilleAustralia
  10. 10.Monash Children’s Cancer CentreMonash HospitalClaytonAustralia
  11. 11.Melbourne IVFParkvilleAustralia
  12. 12.Reproductive ServicesThe Royal Women’s HospitalParkvilleAustralia

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