Fertility preservation options are limited in pre-pubertal boys with cancer. Worldwide, there has been growing interest in testicular tissue cryopreservation as a promising experimental strategy to address future infertility. Herein we aim to measure and compare parent, male cancer survivor, and provider willingness to accept the risk of testicular biopsy among pre-pubertal boys with cancer, and identify reactions to disclosure practices.
A multi-center study with 153 parents of pre-pubertal boys with cancer, 77 male survivors of childhood cancer, and 30 oncology providers was conducted. The threshold technique was used to measure subjects' relative willingness to accept risk for testicular biopsy under four different aspects of care (chance of infertility, complications from biopsy, development of technology to use tissue, and tissue storage cost). Forty-seven in-depth interviews were conducted to identify reactions to disclosure practices.
Fifty-two (67%) survivors, 22 (73%) providers, and 110 (72%) parents selected to have testicular biopsy (versus no biopsy). The median minimum infertility risk to make biopsy worthwhile varied from 25% to 30% among the 3 respondent groups. Interviews revealed that some providers would not offer biopsy in cases of higher perceived risk than benefit, that parents preferred having information regardless of risk of infertility, and non-disclosure elicited adverse feelings from some parents.
Parents, survivors and providers were willing to accept risk for pre-pubertal testicular biopsy. Parental/survivor desire for information and provider decisions to not disclose suggests that barriers to information delivery need to be addressed.
The Journal of urology. 2016 Mar 03 [Epub ahead of print]
Abha A Gupta, Rachel M Donen, Lillian Sung, Katherine M Boydell, Kirk C Lo, Derek Stephens, Sheila Pritchard, Carol Portwine, Anne Marie Maloney, Armando J Lorenzo
Division of Haematology/Oncology, Department of Pediatrics, The Hospital for Sick Children and University of Toronto, Toronto, Ontario, Canada., Division of Urology, Department of Surgery, The Hospital for Sick Children and University of Toronto, Toronto, Ontario, Canada., Division of Haematology/Oncology, Department of Pediatrics, The Hospital for Sick Children and University of Toronto, Toronto, Ontario, Canada., Mental Health, Black Dog Institute, University of New South Wales, Sydney, Australia., Division of Urology, Department of Surgery, Mount Sinai Hospital and University of Toronto, Toronto, Ontario, Canada., Research Institute; Biostatistics, Design & Analysis, The Hospital for Sick Children, Toronto, Ontario, Canada., Division of Hematology/Oncology, Department of Pediatrics, BC Children's Hospital, Vancouver, British Columbia, Canada., Division of Hematology/Oncology, Department of Pediatrics, McMaster Children's Hospital, Hamilton, Ontario, Canada., Division of Haematology/Oncology, Department of Pediatrics, The Hospital for Sick Children and University of Toronto, Toronto, Ontario, Canada., Division of Urology, Department of Surgery, The Hospital for Sick Children and University of Toronto, Toronto, Ontario, Canada; Mental Health, Black Dog Institute, University of New South Wales, Sydney, Australia. Electronic address: .