title: Testicular Biopsy for Fertility Preservation in Prepubertal Boys with Cancer: Identifying Preferences for Procedure and Reactions to Disclosure Practices.
abstract: Fertility preservation options are limited in prepubertal boys with cancer. Worldwide there has been growing interest in testicular tissue cryopreservation as a promising experimental strategy to address future infertility. We measured and compared parent, male cancer survivor and provider willingness to accept the risk of testicular biopsy among prepubertal boys with cancer, and identified reactions to disclosure practices.
  
  
  
  We conducted a multicenter study that included 153 parents of prepubertal boys with cancer, 77 male survivors of childhood cancer and 30 oncology providers. The threshold technique was used to measure subject relative willingness to accept risk of testicular biopsy under 4 different aspects of care, ie chance of infertility, complications from biopsy, development of technology to use tissue and tissue storage cost. A total of 47 in-depth interviews were conducted to identify reactions to disclosure practices.
  
  
  
  A total of 52 survivors (67%), 22 providers (73%) and 110 parents (72%) selected to have testicular biopsy (vs no biopsy). 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 greater perceived risk than benefit, that parents preferred having information regardless of risk of infertility and that nondisclosure elicited adverse feelings from some parents.
  
  
  
  Parents, survivors and providers were willing to accept risk of prepubertal testicular biopsy. Parental/survivor desire for information and provider decision not to disclose suggest that barriers to information delivery need to be addressed.
authors.affiliation: Division of Hematology/Oncology, Department of Pediatrics, Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada. Electronic address: abha.gupta@sickkids.ca.
authors.forename: Abha A
authors.initials: AA
authors.lastname: Gupta
authors.affiliation: Division of Urology, Department of Surgery, Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada.
authors.forename: Rachel M
authors.initials: RM
authors.lastname: Donen
authors.affiliation: Division of Hematology/Oncology, Department of Pediatrics, Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada.
authors.forename: Lillian
authors.initials: L
authors.lastname: Sung
authors.affiliation: Black Dog Institute, University of New South Wales, Sydney, New South Wales, Australia.
authors.forename: Katherine M
authors.initials: KM
authors.lastname: Boydell
authors.affiliation: Division of Urology, Department of Surgery, Mount Sinai Hospital, University of Toronto, Toronto, Ontario, Canada.
authors.forename: Kirk C
authors.initials: KC
authors.lastname: Lo
authors.affiliation: Division of Biostatistics, Design and Analysis, Research Institute, Hospital for Sick Children, Toronto, Ontario, Canada.
authors.forename: Derek
authors.initials: D
authors.lastname: Stephens
authors.affiliation: Division of Hematology/Oncology, Department of Pediatrics, BC Children's Hospital, Vancouver, British Columbia, Canada.
authors.forename: Sheila
authors.initials: S
authors.lastname: Pritchard
authors.affiliation: Division of Hematology/Oncology, Department of Pediatrics, McMaster Children's Hospital, Hamilton, Ontario, Canada.
authors.forename: Carol
authors.initials: C
authors.lastname: Portwine
authors.affiliation: Division of Hematology/Oncology, Department of Pediatrics, Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada.
authors.forename: Anne Marie
authors.initials: AM
authors.lastname: Maloney
authors.affiliation: Division of Urology, Department of Surgery, Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada; Black Dog Institute, University of New South Wales, Sydney, New South Wales, Australia. Electronic address: armando.lorenzo@sickkids.ca.
authors.forename: Armando J
authors.initials: AJ
authors.lastname: Lorenzo
mesh_terms: D000328:Adult; D001706:Biopsy; D002648:Child; D002675:Child, Preschool; D015925:Cryopreservation; D003657:Decision Making; D005260:Female; D059247:Fertility Preservation / Q000379:methods*; D006801:Humans; D007248:Infertility, Male / Q000209:etiology / Q000517:prevention & control*; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000628:therapy*; D010290:Parents; D057240:Patient Preference; D012306:Risk; D013737:Testis / Q000473:pathology; D014342:Truth Disclosure
keywords: biopsy; cryopreservation; fertility preservation; testicular neoplasms