“I wanna know what to expect” - Care needs regarding sexual and reproductive health after cancer in adolescence and young adulthood (AYA) and recommendations for providers

Abstract

Purpose

To assess care needs related to sexual and reproductive health of patients and survivors diagnosed with cancer during adolescence and young adulthood (AYA).

Methods

Participants (N = 190) were predominantly female (87.4%) and diagnosed with cancer between age 12–39 years. Common diagnoses included breast cancer (37.1%) or leukemia/lymphoma (27.2%). Cancer patients/survivors completed an online survey, which assessed care needs regarding sexual health and fertility/reproductive health. They provided written open answers, which were qualitatively analyzed.

Results

Care needs related to sexual health varied and included a need for more information about possible effects on sexual health, which will enable patients/survivors to better anticipate (physical and mental) side effects of cancer on sexual health. AYA patients/survivors need support from providers who normalize the topic of sex, who offer guidance in coping with numerous questions, who provide resources and practical tips and tricks, and who refer to specialists if needed. Participants would like providers to initiate conversations and communicate openly and honestly without taboo, bias, or shame. Care needs regarding reproductive health included needing support in navigating reproduction after cancer, while unmet information needs were central. This included needing information about fertility status and assessment options, reproduction/contraceptives, the safety of pregnancies, and the (im)possibility of alternatives to biological parenthood.

Conclusion

Communication is key in informing and supporting AYA cancer patients and survivors regarding their sexual and reproductive health. Providers should assess individual patients'/survivors’ needs and tailor information that is tangible accordingly. Additional recommendations for healthcare providers are presented.