Adolescent Oncofertility Discussions and Decision Making in Pediatric Oncology

With the gradual increase in cases of adolescent cancer and advances in its treatment leading to overall high survival rates, there exists a growing population of survivors. Such an achievement indicates stakeholders’ concerns not only for survival but also quality of life issues after successful treatment. Due to the fact that cancer and/or its treatment may be gonadotoxic, causing patients’ fertility to be diminished or eliminated, a salient quality of life issue for many young cancer survivors is the ability to become parents. In alignment with the bioethical principles of respect for autonomy and beneficence/non-maleficence, improvements in fertility preservation (FP) techniques have enabled adolescent cancer patients to preserve their ability to parent genetically-related children. However, utilization of FP may come at the cost of delaying lifesaving treatment. Thus, the decision regarding whether to pursue FP is not necessarily a simple one. How do involved parties make and understand such decisions? Furthermore, with multiple means to become a parent, some via assisted reproductive technologies and others via more traditional ways, how does genetic relatedness factor into FP decision making?
Primarily through systematic literature review and qualitative methodology this dissertation explores the perceptions of all stakeholders in adolescent oncofertility decision making – specifically decisions about FP and related matters, such as plans for future use of preserved biological materials. The systematic literature review of adolescent oncofertility discussions provides a global overview of the current state of research. Qualitative research investigates these discussions and decisions, from the woefully underrepresented perspectives of adolescents and parents (as compared to the extensively researched perspectives of healthcare professionals), specifically within a context that has not previously been explored: the pronatalist society of Israel. Analysis explores how such a context uniquely influences these discussions and decisions.
This dissertation suggests further directions for future research within the area of adolescent oncofertility and proposes a number of recommendations for healthcare professionals to lead efficacious oncofertility discussions with adolescent patients and their parents. It concludes with a brief examination of the relevance and import of fertility and a call for healthcare professionals, academics, and the media to play instrumental roles in the charge for sociocultural change that will benefit all persons facing reproductive difficulties.