Sadunee Jayasuriya1,2,3, Michelle Peate4, Catherine Allingham5,4, Nancy Li5,4, Lynn Gillam6,7, Margaret Zacharin8,9, Peter Downie10,11, Paddy Moore5, Leanne Super11,12, Lisa Orme11, Franca Agresta13, Catharyn Stern13,14, Yasmin Jayasinghe5,4,9. 1. Monash University, Clayton, Australia. sadunee.jayasuriya@unimelb.edu.au. 2. Department of Paediatric & Adolescent Gynaecology, The Royal Children's Hospital, Parkville, Australia. sadunee.jayasuriya@unimelb.edu.au. 3. Department of Obstetrics & Gynaecology, The Royal Women's Hospital, University of Melbourne, Parkville, Australia. sadunee.jayasuriya@unimelb.edu.au. 4. Department of Obstetrics & Gynaecology, The Royal Women's Hospital, University of Melbourne, Parkville, Australia. 5. Department of Paediatric & Adolescent Gynaecology, The Royal Children's Hospital, Parkville, Australia. 6. Melbourne School of Population and Global Health, University of Melbourne, Parkville, Australia. 7. Children's Bioethics Centre, The Royal Children's Hospital, Parkville, Australia. 8. Department of Endocrinology, The Royal Children's Hospital, Parkville, Australia. 9. Murdoch Children's Research Institute, Parkville, Australia. 10. Department of Paediatrics, Monash University, Clayton, Australia. 11. Children's Cancer Centre, The Royal Children's Hospital, Parkville, Australia. 12. Monash Children's Cancer Centre, Monash Hospital, Clayton, Australia. 13. Melbourne IVF, Parkville, Australia. 14. Reproductive Services, The Royal Women's Hospital, Parkville, Australia.
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.
PURPOSE: With over 80% of paediatric and adolescent cancerpatients 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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