The next chapter in Oncofertility Communication: Sharing Information and Building Relationships across Disciplines addresses Disparities in Adolescent Patient-Provider Communication Regarding Fertility. The authors, Amanda B. Fuchs and Dr. Robert E. Brannigan, provide detailed information regarding the disparities between providers and their adolescent patients even though in 2006 the American Society of Clinical Oncology (ASCO) published recommendations that oncologists should not only inform patients of the possibility of infertility as a result of cancer treatment, but must also discuss fertility preservation options with patients of childbearing age, including adolescents. While the recommendations are available to oncologists, it is obvious that fertility preservation counseling services are still not reaching the adolescent patient population to the level needed.
Studies have shown that females are more likely than males to seek evaluation of fertility status but both males and females express regret for not having undergone fertility preservation prior to treatment. But when dealing with adolescents, providers are in a difficult situation because adolescents have a wide range of understanding of fertility and are unlikely to initiate such a difficult discussion. However difficult the conversation may be, the data shows that more than 90% of female oncology patients between 10-21 express a strong concern for their future and they (and their parents) would consider pursuing ‘research treatment’ as a way to preserve fertility as long as treatment was not delayed longer than 1 month. While parents and adolescents may not be willing to delay treatment to undergo fertility preservation procedures, it is important that physicians inform patients and their families about long-term effects of cancer treatments and offer them the fertility preservation option so they may avoid regret down the road or feel they were mis-informed by their physician.
When dealing with adolescent patients, providers are often faced with the complicated task of discerning the physical and intellectual developmental stage of the patient before broaching the fertility preservation discussion. This is important because the fertility preservation options that are available to post-pubertal patients are not always the same as those available to pre-pubertal adolescents. Thus, it is necessary to create a paradigm that more clearly defines which patients are candidates for each fertility preservation option. Some providers feel uncomfortable discussing fertility preservation with adolescents because it requires a basic understanding of sex and reproduction. Training tools are necessary to assist physicians and nurses in the education of patients and their parents.
Beyond the difficulty discussing fertility preservation with patients, there are a myriad of ethical concerns that are brought to light when considering fertility preservation in adolescent. Adolescents are not legally allowed to provide informed consent and must rely on the legal protection of their parents. Older adolescents are able to provide informed assent (agreeing or disagreeing to the procedure or treatment) and the age of understanding varies between 9 and 14. Nine year olds are less competent in understanding medical information but are able to demonstrate evidence of choice and reasonable outcome. Fourteen year olds, on the other hand, have demonstrated a level of competency and informed decision making equal to adults. While adolescents may not have the legal ability to make the decision, it is important for providers to acknowledge their awareness of their illness and make them feel empowered in the medical decision making process.
Chapter 9 of Oncofertility Communication reiterates the need for knowledge dissemination to providers in the medical field so they can adequately discuss fertility preservation options to the adolescent population and dispel communication disparities. Please browse through the Oncofertility Consortium website to learn more about the resources available to adolescents and their parents. You can also find more information at MyOncofertility.org, our Fertility Preservation Patient Navigator website, and SaveMyFertility.org.