Testicular Biopsy for Fertility Preservation in Prepubertal Boys with Cancer: Identifying Preferences for Procedure and Reactions to Disclosure Practices.
PURPOSE
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.


MATERIALS AND METHODS
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.


RESULTS
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.


CONCLUSIONS
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.
['Gupta|Abha A|AA|', 'Donen|Rachel M|RM|', 'Sung|Lillian|L|', 'Boydell|Katherine M|KM|', 'Lo|Kirk C|KC|', 'Stephens|Derek|D|', 'Pritchard|Sheila|S|', 'Portwine|Carol|C|', 'Maloney|Anne Marie|AM|', 'Lorenzo|Armando J|AJ|']
D000328:Adult D001706:Biopsy D002648:Child D002675:Child, Preschool D015925:Cryopreservation D003657:Decision Making D005260:Female D059247:Fertility Preservation D006801:Humans D007248:Infertility, Male D008297:Male D008875:Middle Aged D009369:Neoplasms D010290:Parents D057240:Patient Preference D012306:Risk D013737:Testis D014342:Truth Disclosure
biopsy fertility preservation cryopreservation testicular neoplasms