This is the first article of two detailing a systematic literature review on adolescent oncofertility discussions. It explores these discussions from the perspectives of all stakeholders involved – namely adolescent patients, their parents, and healthcare providers. (The second article, which focuses on recommendations to improve these discussions, is currently under review.) It was important for me to conduct this systematic literature review as part of my PhD research project whereby I interview Swiss and Israeli adolescents in remission and their parents about the decisions they previously made regarding fertility preservation. A survey will also be distributed to Swiss and Israeli physicians on their beliefs and practices with respect to adolescent fertility preservation. Such research has not been conducted in either country yet and it will be interesting to see whether and how socio-cultural context influences such discussions and/or decisions.
This systematic literature review reveals that most research has investigated the professional’s perspective with respect to oncofertility discussions, followed by the adolescent patient’s perspective. By comparison, relatively few articles examine the parent’s perspective. It is crucial to understand all stakeholders’ perspectives on the topic in order for healthcare providers to fulfill their professional obligation to help and meet the needs of adolescent patients and their parents. It is clear that adolescent patients and parents alike are interested in receiving information about the effects of cancer and/or treatment on fertility and available fertility preservation options.
Interestingly, from the interviews I have conducted thus far, while many adolescents and parents have thought about reproduction prior to a cancer diagnosis, not all have. In this way, sometimes healthcare providers might need to help adolescent patients and their parents think about long-term quality of life issues that are not necessarily developmentally appropriate.
Although the literature notes various obstacles to having such discussions, research indicates that healthcare providers themselves can provide solutions in overcoming them and even are aware of practices to best facilitate these important discussions. Furthermore, seeing as medicine has shifted from a paternalistic model of care to one of shared medical decision making, communication and comprehension of all stakeholders’ perspectives is crucial. Hopefully this article helps contribute to this goal by aggregating and outlining several key patterns in the current research on adolescent oncofertility discussions.
I am a PhD candidate in the field of bioethics at the University of Basel in Switzerland. I earned a bachelor’s degree in anthropology from the University of Wisconsin-Madison in the United States and master’s degrees in applied ethics from Utrecht University in the Netherlands and Linköping University in Sweden. My professional interests include reproductive ethics and decision making.