Childhood cancer fertility preservation decision aid: development and field testing

Abstract

There is an increased number of childhood cancer survivors living into adulthood. As more survivors live into adulthood, researchers have been able to study and better understand the late effects of cancer treatment. A well-known late effect of cancer treatment is the risk of infertility. Cancer-related infertility is a source of distress to cancer survivors. There have been many advances to fertility preservation over the last few years and there are now multiple options available for both men and women. Despite the improved understanding of the risk of cancer-related infertility and advances to fertility preservation treatment, these services remain underutilized by cancer patients. It is known that discussing fertility preservation options with newly diagnosed cancer patients improves survivors’ long-term quality of life and reduces decisional regret, regardless of if they pursue fertility preservation treatment. Survivors often report that the risk of treatment-related infertility and/or available fertility preservation options was often inadequately or not discussed with them at the time of diagnosis. The use of fertility preservation decision aids for adult patients newly diagnosed with cancer have been proven to be effective at improving participants’ knowledge surrounding fertility preservation, reducing decisional conflict, and reducing long term decisional regret. A fertility preservation decision aid has not yet been developed for use by adolescents newly diagnosed with childhood cancer. This study aims to engage survivors and providers to develop a fertility preservation decision aid to improve the decision quality of adolescents newly diagnosed with childhood cancer who are determining their preferences on accepting a referral to a fertility specialist. This study then proposes to field test the decision aid with newly diagnosed patients. The use of a decision aid will lead adolescents with childhood cancer to have increased knowledge on the risk of infertility and the fertility preservation options available. This study also aims to lower participants’ levels of decisional conflict about their fertility preferences. There is a need to incorporate the use of a fertility preservation decision aid into childhood cancer treatment. If this decision aid proves effective, referral to the fertility preservation decision aid may become common practice at the time of initial diagnosis. If the decision aid is effect at improving decision quality and reducing decisional conflict, survivors may experience long-term benefits including improved quality of life and reduced levels of decisional regret.