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



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.


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.


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.


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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  1. 1.

    Oktay K, Harvey BE, Partridge AH, et al. Fertility preservation in patients with cancer: ASCO clinical practice guideline update. J Clin Oncol. 2018;36(19):1994–2001.

    Article  PubMed  Google Scholar 

  2. 2.

    Schover LR. Patient attitudes toward fertility preservation. Pediatr Blood Cancer. 2009;53(2):281–4.

    Article  PubMed  Google Scholar 

  3. 3.

    National Institute for Health and Care Excellence. Fertility problems: assessment and treatment. United Kingdom: NICE2013. Report No. p. CG156.

  4. 4.

    AYA cancer fertility preservation guidance working group. Fertility preservation for AYAs diagnosed with cancer: Guidance for health professionals. [Cancer Council Australia Cancer Guidelines Wiki Web site]. October 6, 2017. Available at: Accessed December 3, 2017.

  5. 5.

    Adams E, Hill E, Watson E. Fertility preservation in cancer survivors: a national survey of oncologists' current knowledge, practice and attitudes. Br J Cancer. 2013;108(8):1602–15.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  6. 6.

    McQuillan SK, Malenfant D, Jayasinghe YL, et al. Audit of Current Fertility Preservation Strategies used by individual pediatric oncologists throughout Australia and New Zealand. J Pediatr Oncol. 2013;1:112–8.

    Google Scholar 

  7. 7.

    Schover LR, Brey K, Lichtin A, et al. Oncologists’ attitudes and practices regarding banking sperm before cancer treatment. J Clin Oncol. 2002;20(7):1890–7.

    Article  PubMed  Google Scholar 

  8. 8.

    Vadaparampil S, Quinn G, King L. etl al. Barriers to fertility preservation among pediatric oncologists. Patient Educ Couns. 2008;72(3):402–10.

    Article  PubMed  Google Scholar 

  9. 9.

    Li N, Jayasinghe Y, Kemertzis MA, et al. Fertility preservation in pediatric and adolescent oncology patients: the decision-making process of parents. J Adolesc Young Adult Oncol. 2017;6(2):213–22.

    Article  PubMed  Google Scholar 

  10. 10.

    Becerra Perez MM, Menear M, Brehaut JC, et al. Extent and predictors of decision regret about health care decisions: a systematic review. Med Decis Mak. 2016;36(6):777–90.

    Article  Google Scholar 

  11. 11.

    O'Connor AM. User manual – Decision Regret Scale [document on the Internet]. Ottawa: Ottawa Hospital Research Institute; ©; 1996. modified 2003; cited 2018 11 20]. 3 p. Available from

    Google Scholar 

  12. 12.

    Bastings L, Baysal O, Beerendonk CC, et al. Deciding about fertility preservation after specialist counselling. Hum Reprod. 2014;29(8):1721–9.

    Article  CAS  PubMed  Google Scholar 

  13. 13.

    Benedict C, Thom B, Kelvin JF. Young adult female cancer survivors’ decision regret about fertility preservation. J Adolesc Young Adult Oncol. 2015;4(4):213–8.

    Article  PubMed  PubMed Central  Google Scholar 

  14. 14.

    Letourneau JM, Katz PP, Smith JF, et al. The impact of fertility counseling and fertility preservation on long-term psychosocial outcomes in young female cancer survivors. Fertil Steril. 2010;94(4):S65.

    Article  Google Scholar 

  15. 15.

    Letourneau JM, Ebbel EE, Katz PP, et al. Pretreatment fertility counseling and fertility preservation improve quality of life in reproductive age women with cancer. Cancer. 2012;118(6):1710–7.

    Article  PubMed  Google Scholar 

  16. 16.

    Mersereau JE, Goodman LR, Deal AM, et al. To preserve or not to preserve: how difficult is the decision about fertility preservation? Cancer. 2013;119(22):4044–50.

    Article  PubMed  PubMed Central  Google Scholar 

  17. 17.

    Chan SW, Niemasik EE, Kao CN, et al. Decisional regret in women diagnosed with cancer who undergo reproductive health counseling (RHC). Fertil Steril. 2014;100(3):S26.

    Article  Google Scholar 

  18. 18.

    Chan JL, Letourneau J, Salem W, et al. Regret around fertility choices is decreased with pre-treatment counseling in gynecologic cancer patients. J Cancer Surviv. 2017;11(1):58–63.

    Article  PubMed  Google Scholar 

  19. 19.

    Jadoul P, Guilmain A, Squifflet J, et al. Efficacy of ovarian tissue cryopreservation for fertility preservation: lessons learned from 545 cases. Hum Reprod. 2017;32(5):1046–54.

    Article  CAS  PubMed  Google Scholar 

  20. 20.

    McDougall RJ, Gillam L, Delany C, et al. Ethics of fertility preservation for prepubertal children: should clinicians offer procedures where efficacy is largely unproven? J Med Ethics. 2017;0:1–5.

    CAS  Google Scholar 

  21. 21.

    Lorenzo AJ, Pippi Salle JL, Zlateska B, et al. Decisional regret after distal hypospadias repair: single institution prospective analysis of factors associated with subsequent parental remorse or distress. J Urol. 2014;191(5 Suppl):1558–63.

    Article  PubMed  Google Scholar 

  22. 22.

    Brehaut JC, O'Connor AM, Wood TJ, Hack TF, Siminoff L, Gordon E, et al. Validation of a decision regret scale. Med Decis Mak. 2003;23(4):281–92.

    Article  Google Scholar 

  23. 23.

    Kemertzis M, Ranjithakumaran H, Hand M, et al. Fertility Preservation Toolkit: A clinician resource to assist clinical discussion and decision making in pediatric and adolescent oncology. J Pediatr Hematol Oncol. 2018;40(3):e133–e139.22.

    Article  PubMed  Google Scholar 

  24. 24.

    Hand M, Kemertzis M, Peate M, et al. A clinical decision support system to assist pediatric oncofertility: a short report. J Adolesc Young Adult Oncol. 2018;7(4):509–13.

    Article  PubMed  Google Scholar 

  25. 25.

    Quinn J, Murphy D, Knapp C, et al. Who Decides? Decision making and fertility preservation in teens with cancer: a review of the literature. J Adolesc Health. 2011;49(4):337–46.

    Article  PubMed  PubMed Central  Google Scholar 

  26. 26.

    Wyns C, Collienne C, Shenfield F, et al. Fertility preservation in the male pediatric population: factors influencing the decision of parents and children. Hum Reprod. 2015;30(9):2022–30.

    Article  CAS  PubMed  Google Scholar 

  27. 27.

    Ginsberg JP, Li Y, Carlson CA, et al. Testicular tissue cryopreservation in prepubertal male children: an analysis of parental decision-making. Pediatr Blood Cancer. 2014;61(9):1673–8.

    Article  PubMed  PubMed Central  Google Scholar 

  28. 28.

    Janz NK, Becker MH. The Health Belief Model: a decade later. Health Educ Q 1984; 11(1):1-47.

  29. 29.

    Baysal O, Bastings L, Beerendonk CC, et al. Decision-making in female fertility preservation is balancing the expected burden of fertility preservation treatment and the wish to conceive. Hum Reprod. 2015;30(7):1625–34.

    Article  CAS  PubMed  Google Scholar 

  30. 30.

    Peate M, Meiser B, Hickey M, et al. The fertility-related concerns, needs and preferences of younger women with breast cancer: a systematic review. Breast Cancer Res Treat. 2009;116(2):215–23.

    Article  PubMed  Google Scholar 

  31. 31.

    Peate M, Meiser B, Cheah BC, et al. Making hard choices easier: a prospective, multicentre study to assess the efficacy of a fertility-related decision aid in young women with early-stage breast cancer. Br J Cancer. 2012;106(6):1053–61.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  32. 32.

    Harcourt D, Russell C, Hughes J, et al. Patient satisfaction in relation to nipple reconstruction: the importance of information provision. J Plast Reconstr Aesthet Surg. 2011;64(4):494–9.

    Article  CAS  PubMed  Google Scholar 

  33. 33.

    Zhong T, Hu J, Bagher S, et al. Decision regret following breast reconstruction: the role of self-efficacy and satisfaction with information in the preoperative period. Plast Reconstr Surg. 2013;132(5):724e–34e.

    Article  CAS  PubMed  Google Scholar 

  34. 34.

    Lantz PM, Janz NK, Fagerlin A, et al. Satisfaction with surgery outcomes and the decision process in a population-based sample of women with breast cancer. Health Serv Res. 2005;40(3):745–67.

    Article  PubMed  PubMed Central  Google Scholar 

  35. 35.

    Jayasinghe Y, Kemertzis M, Hand M, et al. Decision support tools in paediatric and adolescent oncofertility for clinicians and parents. Pediatr Blood Cancer. 2017;64:S110–S11134.

    Article  CAS  Google Scholar 

  36. 36.

    Hong P, Gorodzinsky AY, Taylor BA, et al. Parental decision making in pediatric otoplasty: the role of shared decision making in parental decisional conflict and decisional regret. Laryngoscope. 2016;126(Suppl 5):S5–S13.

    Article  PubMed  Google Scholar 

  37. 37.

    Peate M, Meiser B, Friedlander M, et al. It's now or never: fertility-related knowledge, decision-making preferences, and treatment intentions in young women with breast cancer--an Australian fertility decision aid collaborative group study. J Clin Oncol. 2011;29(13):1670–7.

    Article  PubMed  Google Scholar 

  38. 38.

    O'Connor A. Validation of a decisional conflict scale. Med Decis Mak. 1995;15(1):25–30.

    Article  CAS  Google Scholar 

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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.


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).

Author information




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).

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